Two years since I have last had cancer in my brain. Since it was the first time for it to visit there, full brain radiation was the way to go to treat over 50 lesions. After 2 years you have a far less chance of it coming back up there. Unless you’re me! Then it doesn’t matter! So here I am with it again with a ridiculous amount of lesions and this time with swelling on the brain. The problem being, I am maxed out of brain radiation and Cyber knife is not an option. For those of you who are unfamiliar with Cyber knife, it’s essentially targeted radiation that focuses on one lesion causing problems. Since many are causing swelling, it can’t be targeted.
I am 29 years old and I feel good. I am not ready to go. Since I have been fighting this beast since January of 2012, I feel like I have acquired a lot of information about treatments and how to help other patients understand what they are going to be walking through. One thing I have learned is that MOST chemotherapy treatments do not cross the blood-brain barrier, which means the brain goes untreated. (In recent studies, metastatic breast cancer, small cell lung cancer and melanoma have proven otherwise.) Knowing that chemo to the brain is not as effective as radiation is, I felt pretty hopeless. Don’t get me wrong, I am still absolutely terrified, confused, overwhelmed and if one more person tells me to pray on it, I am going to crack into a million pieces. Pray on it? Uhm hey God, why are you curing 84 year olds and sticking me with this crap every couple of months? No I think I will focus on my faith, knowing this isn’t anyone’s fault and for the sake of my lifeline hope and pray that there is something after this. To say my faith is wavering is quite the understatement. I appreciate all of the prayers that I receive via social media and in person, but in my mind right now, I feel lost.
Like I have previously said, once you think you understand this cancer thing, it’ll throw you for a loop and remind you that you are not in control of this. Thankfully I have been blessed with amazing nurses, doctors and support. Very crucial elements for even starting this journey, let alone staying semi-sane throughout it all!
I will be at UNC which is 2 hours away from my home. Good thing I love my new car! Sidenote: She is beautiful and fun to drive! Her name is Tyra because she is fabulous!
So back to the trial details. First, they tell you all about how it will work and how often you will have to come in for it. THEN once you feel comfortable they tell you that OH WAIT you have to be approved for it through numerous scans, blood work, treatment history, and so forth. If one teeny tiny thing is off, you are no longer eligible. Just like that. Which for me, is the most nerve-racking part. At this point in my fight, my options are dwindling and to be honest, clinical trials are exciting for me. They are the future. Even if my cancer turns out to be completely unresponsive to the medicine given, I am contributing to the future of cancer care. To me, that is so so worth it!!! Right now, I am awaiting my appointments to make sure I qualify. This could take up to a week and then hopefully we will be moving forward and starting day 1 of the treatment cycles.
is the worst place to be, and currently where I am at. Waiting for testing. Waiting on answers. Waiting to see if this will be even work. This is what I consider the definition of faith and hope. Keeping faith in God and the trial’s results and hope that I am able to get in and my test results turn out to be what they require.
If you are facing a possible clinical trial or you are interested in participating in one, good for you. Make sure you bring a notebook to the appointment and really really read the paperwork that they are giving you. Highlight, ask questions, make sure you are connected with a nurse or patient advocate that will be able to reach your doctor if and when you have further questions. Since this is all new to me, I will be sharing all the new information that I receive, so buckle up! On a new journey we go!!!
Psalm 103:3 (NLT) He forgives all my sins and heals all my diseases.