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 :)
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