Progression

I’m gonna jump right in. Last Sunday, November 10th, I suffered two seizures. The first was like a wire had been cut between my brain and my mouth. I was trying to speak. I knew what I wanted to say. I was making the effort to say it. But words were not coming out; it was just noise, gibberish. And I was completely aware and coherent of that which made it extremely frustrating. Luckily, I was attending a gathering where there were people around who knew to get help right away. At first, it was thought that I was having a stroke. An ambulance was called. Paramedics arrived and transported me to the hospital. The entire way I was fully coherent and trying to speak. My mind was right. My words were wrong. I was terrified. What if this is permanent? How will I communicate with my kids? My family? Anyone? The only phrase I was finally able to speak somewhat understandably was “I’m sorry”. And I was. Because this all happened at a baby shower. I hated that I was distracting from such a special day. After arriving at the hospital is when I suffered the second seizure. It was more like the conventional seizure I think of; the uncontrollable shaking and stiffness. I have no memory of this. Only a nice little bruise on my lip to remind me it happened. My parents witnessed this one. I hate that. I can’t imagine how I would feel watching something like that happen to my child. It was time to start finding answers.

I was sent for a head CT scan right away. That scan revealed spots on my brain. Being that I already have Stage IV Metastatic Breast Cancer I was immediately transferred to the hospital where my Oncologist works out of. It was there that I got a brain MRI. That scan confirmed that I have 50 small cancerous lesions on my brain. Its hard to write that. Its hard to know that. I spent Sunday night and Monday night in the hospital being monitored around the clock in case of more seizures. I came home on Tuesday afternoon with a whole lot of new prescriptions and restrictions. I’m not allowed to drive for at least six months. So I’ve gained more cancer and lost my freedom. I’m on steroids for brain swelling, seizure medication to (hopefully) prevent any more occurrences, Alzheimer’s medication to help protect my short-term memory. And I have a new treatment plan. I will undergo 10 rounds of full brain radiation and start a clinical trial for a new infusion drug. I’m hanging on by a thread.

I had my first round of full brain radiation this past Friday, November 15th. I try not to be dramatic. I try to take everything in stride; one thing at a time. But it is horrible. It doesn’t hurt. But the claustrophobia is intense. As I laid on a flat, cold table a piece of mesh was stretched over my entire face and head. That mesh was then hardened into a piece of hard plastic. My very own custom mask. They secure that mask to the table so that I am completely restrained and restricted from movement. I can’t even blink my eyes. And I’m supposed to keep the rest of my body completely still, too. No deep breaths, no shifts of my hands or feet. It is imperative that the treatment is precise. I have to remain this way while they send radiation through my brain for 25 minutes. I thought of my boys the entire time. I will do this for them. For all of my family and friends. I have nine more to go.

It is probable that I will begin to lose my hair again. I know that should be the least of my worries, but its just one more thing that I have to come to terms with. I will also experience headaches, fatigue and fogginess; I’m actually experiencing that right now. I can tell a difference in my mental power even writing this blog. Words aren’t flowing like usual. Concentrating and focusing is harder. Please don’t judge the errors in this blog. I’m sure they’re here. The entire past week is a fog. I’ve probably had the same conversations everyday but they feel new to me. Thank goodness I had my husband and mom in the hospital while I was meeting with new Doctors because there is no way I would remember what is supposed to happen.

I will end on as positive a note as I can. Even though the amount of cancerous lesions on my brain is alarming, it is a good thing that they are all small. I’m told that small lesions usually respond well to radiation. And to my understanding, the radiation begins to work immediately and will work for up to six weeks after the final treatment. So it won’t be until then that I have another brain scan. Also, there have been positive outcomes from this clinical trial I will begin. I am supposed to have a body scan sometime next month; I am going to push to still get that. I’m hopeful that there has not been any progression besides to my brain. I am going to try to go back to as normal a life as I can in spite of this new, horrendous development. I feel sad, angry, weak. But I won’t give up.

Thank you for keeping up with me and for the continuous outpour of support and encouragement. I will keep you as informed as I can.