Sorry I didn't get on last night to update and give details on my day yesterday. I was exhausted by the time we got home. I was still so tired today but luckily the boys took long naps which means I got a nice nap too!
SO... yesterday was my big MRI, the last MRI we did was before I started radiation so this would show us what my brain tumor looked liked AFTER 6 weeks of radiation. I was really dreading this a few days ago because last week was just plain bad. I thought I had already dealt with enough crap but last week really put me over the edge and put me in a really bad place emotionally. I had been doing so great, I was so positive through everything since I was diagnosed back in December then in a quick 5 second incident last week my entire world was flipped upside down and I was left really wondering why this was all happening to me, what the purpose was, what the message was. I don't go to church as often as I should but I know that God is still looking over me and it just didn't make sense that he would allow me to have to endure so much. I really felt like I was being kicked down over and over and being told to just stay down.
I had some of my lowest moments in the last week but again I received so many messages of encouragement and support from everyone. Everywhere I turned I couldn't help but think that I have too many people rooting for me to let myself stay in this funk. Then on Tuesday night it was like a sense of calm came over me. Like all of a sudden I was back to the old me. I felt my positivity come back, my optimism. It was all back. So I went to bed Tuesday with a feeling that Wednesday would be bringing good news.. I had to be getting good news.... I was LONG overdue for good news!
So Wednesday we got to Froedtert just before 10am. I had a blood draw at 10, my MRI at 11 and then we met with one of my doctors at noon and the other at 1pm. Jamie came with me. He is so busy with work but makes such an effort to be there for me every step of the way. So he actually brought all his work with with him and set up at a table inside the Cancer Clinic to work while I was running around. My blood draw was obviously quick so I met back up with Jamie. A little before 11 we were going to head to my MRI but Jamie took a phone call for work so I told him that I would go check in and text him where I was. I went up to the MRI department at the Cancer Clinic like I was told to do but they told me my MRI was moved to Froedtert so I had to walk all the way into the hospital. It wasn't the biggest deal in the world but I am so used to the Cancer building, that is kind of what I was mentally prepared for. I know lots of people there, everyone is so happy and fun it just has a much different feel that Froedtert. Anyways, I got checked in and had to change and wait in a women's waiting room so I texted Jamie to just stay where he was and keep working. My MRI would only be 30 minutes and it would probably take him that long to walk over and find where I was.
I waited in the women's waiting room until someone came in and got me. I laid on the MRI table and was all prepped for the imaging. When you are having an MRI done of your head you have to keep your hear really still so they pad all around your head with foam cushions so you couldn't move even if you wanted to and then a big cage like thing goes over your face and then everyone leaves the room and you get pulled into the machine. For some reason, as soon as the table started pulling me into the machine, I started tearing up. It was totally unexpected and I felt like such a dork. You can't move so the tears were just running down my face and pooling into my ears which had little rubber ear plugs in them. I kept telling myself to pull it together so that I wasn't all red and puffy when I came out of the machine. Well all of a sudden the table was coming out of the machine, it had only been like 2 or 3 minutes, I was still crying and now they would all see me. They said the machine wasn't working right and swapped out a cord and shipped me back in. Another 2 or 3 minutes and I was coming back out again. I had to actually get up off the table and they had to swap out all sorts of stuff. If anyone noticed I was crying, they were nice enough not to bring it up. So once they had the machine all fixed, I laid back down, they got me some new warm blankets and back in I went.
About 2/3 of the way through I get contrast through an IV. They always announce to you when the contrast is coming, right after they told me they were starting contrast I could feel that my arm was all wet. I hit the button to let them know I though the contrast leaked all over my arm so OUT of the machine I came AGAIN for the third time. I was right, something was wrong somewhere in my IV and the contrast leaked out. So they tightened everything up, flushed it with saline to make sure it was working and sent me back in. They immediately announced the contrast was coming and I immediately let them know it was all over my arm again. So I was pulled out for a fourth time! They flushed the IV again with saline and it worked so they figured maybe it was something with the pump that power injects the contrast so they hooked up the pump and started it to have the contrast go in. I immediately winced and screamed. It felt like three tennis balls were being blown up my vein at about 100 miles an hour! It was TERRIBLE. It hurt and I was so freaked out that my vein was going blow up. It did this two more times before they decided to just hand inject the contrast through my IV. They were all SO nice about it but it was the worst MRI ever, usually you just lay there and try and nap through the noise of it all. Now I will forever be freaked out when the contrast goes in at all future MRIs! So FINALLY I was done, they said my doctor had called down to see where I was and that she would still see me. I was confused until I went and got my phone to see it was 12:45!!! My MRI was supposed to be done at 11:30 and I was supposed to meet my doctor at 12. Poor Jamie was freaked out wondering what was taking so long and thinking that if something had happened, no one even knew he was in the building.
I texted Jamie that I was done and to just meet me in the waiting area for my neuro oncologist. We got in to see her right away and she gave us the GREAT news that my tumor was STABLE!!!! She said it actually might even be a little bit smaller! This was really the best news we could have hoped for. We got to see images of the tumor from January compared to the ones from yesterday and it definitely looked a little smaller to us as well. Then we talked about chemo, she let us know our prescription was ready to be picked up right at Froedtert and that I could start it right away or wait until Monday and just enjoy Easter. We decided to wait until Monday, so on Monday I will officially start my year long journey with chemo. It was kind of freaky, they were telling us how I have to be SO careful the days I am taking it to make sure no one else is exposed to it. The chemo kind of works it's way through your body and eventually some of it comes out. It doesn't come out through saliva or sweat but does come out other ways so you have to be really cautious that no one else in your household is exposed to it when it comes out. Like after I go to the bathroom, I need to make sure I flush TWICE with the lid down, after I take my pill IMMEDIATELY wash my hands in case any tiny little flecks of it were to be on my hand so that Jamie and the boys aren't ever exposed to any of it. Obviously they are being overly cautious about it but it still seems weird to me that we have to be so careful about maybe a teeny tiny fleck of it being on my hand that Jamie could touch and yet I am swallowing pills full of it. It was a little bit of a reality check on just how real this is but I know it's what I need.
Then we got to meet with my radiation oncologist. She also agreed that my tumor looked slightly smaller. We got to thank her for her amazing radiation plan that she did for me. She is so funny and always told me that I had the Rolls Royce of radiation, a newer treatment that they just started using about a year ago that is more effective. I got to see all the other gals up there in the radiation department too! So nice to see so many familiar faces! It made my day and I gave lot of hugs. Natalie if you are reading this... i am bummed you weren't there but I will stop by next time I am there!
So that is my update! Chemo starts on Monday and hopefully it keeps this brain tumor in check for a long LONG time! Although I felt really tired today, I also felt really nice, knowing that radiation was effective, that my tumor isn't growing, that I am in a better place emotionally. I am not sure what the big plan is for me, I still think, as probably lots of people would agree, that I have been given more to deal with in the last few months than most people would deal with in a lifetime BUT I can't help but continue to stay positive and optimistic. Yesterday was good news, it's got to the start of something, a new beginning with lots of good things ahead. Owen had been doing AMAZING lately, talking like he has never talked before, jumping and doing physical things he couldn't do before. Owen and Jacob played together for a good hour, talking, laughing, being brother and friends. This doesn't usually happen, I stopped cleaning my kitchen and just peeked my head around the corner to just watch them interact. It made my heart swoon. How can I be sad and depressed when I have so many great things in my life. How can I let the terrible actions of two people last week affect my way of looking at everyone and everything around me? I have SO many good people surrounding me, filling me with love and support. I have seen so many people step up to help our family, there is just no way that I can let ALL that good be overshadowed by one bad incident. That's not who I am.... a person who dwells on the bad stuff. Bad stuff happens, that's life...I get over it and move forward. I CHOSE to look for the good, even in really bad situations. That's what make me... me. Yes, I have down days and days where I cry non stop but I always pick myself back up and get back to life. That's what I want my kids to remember about me, to learn from me. That sometimes life isn't easy, sometimes it just plain sucks but you have to get up everyday and live life. This brain tumor isn't going to define me, being physically assaulted last week isn't going to define me. Both of these things have definitely had a life long effect on me but they don't define me by any means. I am a strong woman, I look out for others, try to find the good in every situation, work hard to inspire and motivate others... that is who I was before and that is who I will always be and that is why I am beating this tumor!
Again, I can't thank everyone enough for all the support. I had so many messages and texts yesterday cheering me on. Thanks to my mom for watching the boys, thanks to Erin for the amazing purple tulips that were at my house yesterday when we got home, thanks to everyone for all the encouragement. A special thanks to Jamie. We went out to dinner last night to celebrate our good news and we got on the conversation of our honeymoon and then laughed about how young we were and how we didn't have a care in the world. Then I thought about how much I loved him when we were first married, not knowing that I could love him even more than that... BUT I love him a MILLION times more today than I did when we were married almost 10 years ago. He has been the most amazing person to have stand by me through all of this. Being with me for every doctor appointment I ask him to be at even if it means he will be working until 1 or 2 in the morning that night to catch up with work. He has been such a rock for our family. When I am having a bad day emotionally or physically he checks in with me all day long, comes home as soon as he can and makes dinner and does everything with the boys. I would definitely be a mess without him. My favorite part of today was walking back from the park with the boys, they were both on their bikes and Jamie pulled up right next to us surprising both boys who both yelled "DADDY!" It's obvious they love him just as much as I do.
Well off to watch a little tv before heading to bed. Thanks for all the love!
This was a LONG post. I will end with some photos of my cuties from last summer.