Help Marissa Fight Brain Cancer!

I've lived with a baseball-sized astrocytoma with gliomatosis brain tumor (brain cancer) in my right temporal lobe, unknowingly, for most of my life.

 I am two months post
craniotomy (cranitomy was in March 2021), in which they removed my skull bone, and re-sectioned the baseball-sized tumor. I've relearned how to walk, I’m learning to navigate life with epilepsy, I'm relearning how to see with just one good eye now (they had to cut through the occipital fibers, and I lost peripheral vision in my left eye). I'm adjusting to my new brain post brain surgery. My cranial neurosurgeon was able to remove most all of the largest tumor! Dr. Fauci has some of it, and is
studying my DNA!!!

The nature of this tumor is infiltrative, meaning it has spread throughout my brain. The rest of the cancer was initially missed. My neurosurgeon only noticed the obvious tumor in my right temporal lobe. I was assigned an oncologist who told me everything was gone. Then we find out he was a LUNG oncologist (who knew nothing about the brain), and there were NO BRAIN oncologists in market.  It was only when, after surgery, when we went to MayoClinic that they found the cancer had spread throughout, in all parts of my brain. Left side too. What happens is, if we don't treat it now, the cancer will grow into tumors everywhere, in inoperable places. And if not treated now, it'll be too late, and it will continue to spread, grow, change grades...and in the future I won't have a fighting chance.

Because it is IDH+ and negative CDKN2A/B homozygous deletion, 6 weeks of PROTON THERAPY combined with CHEMOTHERAPY
(12 months daily chemotherapy afterwards) can give me the most favorable prognosis. 

I'll have to be on fertility drugs, because chemo can make me infertile. I will lose my hair from radiation (but it'll grow back!!)

Because they have to radiate both sides of my hippocampus, I'm now on dementia medication. I'm 32 and I might develop a little
Alzheimer's.

Because they have to radiate my pituitary gland, I'll be on hormones, too, to even me out over time. Lots of therapy, too, when you have a 

new brain, and a damaged temporal lobe

The radiation will hit all of my brain, but because it's proton radiation, it hopefully won't damage too many good cells. I can expect to have
short-term memory loss.

I will have MRIs for the rest of my life, and I'll be traveling 1,000 miles to Rochester every 2 months for them for the first 4-5 years. I'll be on chemo every day until summer of 2022. Donations would go towards MRIs, oncology appointments, radiology, blood work, treatment, travel and hotel to Mayo Clinic, treatment for comorbidities that come along with brain cancer. Each trip to MayoClinic exceeds 6k, and this is every two months. This is an incurable disease, and I will spend the rest of my life fighting it. 

I will be working with lots of therapists and epileptologists because there is a lot of collateral damage to my brain. My insurance is refusing to pay. On top of it, I pay out of pocket for insurance since our company laid off its workers during covid (and I haven't been able to work since the cancer diagnosis). Everything is out of pocket costs. 

I can't predict my recovery. I don't know who I will be after radiation, and treatment. I am hopeful treatment will keep my tumor stable for a long time. I don't know when I'll be able to work again...drive a car...be left
alone...feel safe... I just know...I am the luckiest girl on earth to be so loved by all of you. I couldn't go through this..financially...emotionally...without all of your support. I am eternally grateful for you all.

Thank you. Thank you thank you thank you. I love you.

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