I am beautiful, talented, and the best mom and wife ever!
My husband wrote that above as he was helping me set up this blog and well, how could I delete it?! Truth be told, he is the greatest husband ever.
About four months ago I started having really painful headaches but they would come and go so I didn’t think too much of it. I chalked it up to a migraine or the fact that I probably had too much wine. They would last a few minutes and then go away. Sometimes they would come back a few minutes later and other times it would be a week. It wasn’t until January that they returned and just didn’t stop. it got to a point where I would curl up in a ball in bed for hours in tears because of how intense the pain was. And by this point they were daily. I finally convinced myself that I needed to go to the doctor. When I first went in they didn’t give me too many answers except that it wasn’t a migraine. So I did a CT and it came back normal. Well, mostly normal. They said I had a venous angioma but it wasn’t anything to worry about. The following week I went back in for a follow up and they still had no idea what was going on so from there I was sent to a neurologist. After meeting with the neurologist I finally felt like we knew what was going on. He said he believed I had what was called “Hemicrania continua”which is just a fancy way of saying continuous headaches. He prescribed me some meds, gave me some shots to the temple (which are not pleasant) and I thought that was that. He decided to send me to get an MRI just in case because we would rather be safe than sorry. Sure, no big deal. Went in for the MRI, hated it and left saying “good thing I wont have to do that again.” hah. It wasn’t even 3 hours later that we got the call from my neurologist saying that I needed to come in immediately because they found something on my scan and that it would be best for me to have someone with me. I knew right then and there that this was bad. My heart sank and I just broke down. It felt like some tragic movie.
Sitting in the waiting room for those results was so agonizing. I had no idea what they were going to tell us. Finally they called us back. He pulled up my scans and then we saw it. Right smack dab in the middle of my brain. A lesion. That’s what he first told us it was. A lesion doesn’t sound so bad. That sounds repairable. but he handed me my paper to leave and it said tumor. I had a brain tumor. Well this definitely wasn’t a part of the plan. That night I did what every doctor tells you not to do and I got on google and started researching brain tumors and locations and survival rates. I actually found a lot of good information and felt hopeful. The chances of it being benign were so much higher than it being cancer. So that made me feel a little better.
The next step was to meet with a neurosurgeon which was 2 days later. We felt hopeful going into our meeting with her. When we met with her I could immediately feel the severity of this and she told us I needed to be admitted to the hospital that night. In my head all I could think was “well that escalated quickly.” We left her office feeling so hopeless. Instead of going straight to the hospital we decided to go home and have some family time. We knew our world was being turned upside down and in that moment all i wanted was to be with Michael and Sarah. it was such a beautiful evening. We went on a walk to our neighborhood pond, had a picnic together and drank wine while we watched the sunset. It was truly a perfect evening. It was so wonderful having a sense of normalcy before the storm.
That night we went to our local hospital and I was admitted. Over the next 24 hours I was poked and prodded, given more medications than I can remember, had even more scans done. Everything was just happening so fast. They were pressing to do some pretty invasive tests when we decided (with some help and assistance from our family members who work inn the medical field) to press the brakes and seek help at a different hospital. As much as I love where we live, it’s not the place I want working on my brain. So we were discharged and headed to another hospital for a second opinion. It took a few days to get an appointment but considering it usually takes weeks we were very lucky to get in when we did. This new neurosurgeon gave us so much hope. She believed this was something very treatable and although she couldn’t guarantee anything, she said she believed that I was more likely to die of Alzheimer’s than this. Hearing that brought us so much relief. She scheduled me for a biopsy 5 days out and from that we would have a final diagnosis and could set up a treatment plan from there.
The biopsy was an experience. When I showed up at the hospital, they took me upstairs to pre op and put a halo on my head. For those of you who don’t know what that is, it’s an intense piece of head gear that they screw into your head. Literally. They screwed this thing into my head in four places. It definitely ranks in my top 5 least favorite things I’ve ever done. After the screwed this into my head, they strapped me to a table and started pumping me with medications to calm me down and put me to sleep, or I thought. As it turns out, all anesthesia doesn’t put you to sleep. So for my brain surgery, I was awake. The entire time. I handled it well in the moment because the drugs were good, but man. It was not something I would want to do again and from the sounds of it, I won’t need to. Despite the location they were able to get two small samples of my tumor to send off to pathology. Now we just had to wait for the results.
After my surgery, while waiting in recovery, we met with a neuro oncologist. I didn’t think we would get any sort of news until the pathology report came back, but he was able to give us some information. He told us that I had cancer. Not only did I have cancer, but I had an aggressive type of brain cancer and that the pathology report would tell us how serious it was. I don’t think I have ever felt so hopeless or defeated than I did in that moment. He mentioned I may be able to have a laser surgery to help kill some of the cancer cells but they would have to meet to see if I was a candidate for it. Fast forward 3 days and we have a diagnosis. He told us that on a grade of I-IV I had a grade IV Glioblastoma tumor. The worst. And because of the location and the risk, it was inoperable. Cool. So I have the worst kind of cancer in the worst place possible. Awesome. I would be lying if I said I wasn’t devastated by this news. Hearing that statistically I have 15 months to live is just heart breaking. I’m only 27 years old, I have a beautiful 2 year old daughter and I love my husband more than anything on this earth. How could this be happening!?
The couple of days leading up to now we have been in shock. I have definitely had times of sadness and anger but now that the shock is wearing off, I’m starting to feel more like my happy self. I’ve come to realize that I just have to take everything one day at a time. I can’t dwell on the what if’s because if I do, I wont enjoy the moments that I have now. And even though the odds aren’t in my favor, I know that nothing is too big for God. He is with us and I know that he will see us through.