An Introduction to Kiss My Astrocytoma

Introducing Kiss My Astrocytoma – a personal blogging site. I created this blog site to write about my experiences leading up to and after receiving my diagnosis of brain cancer – more specifically – Grade II Astrocytoma brain cancer. Throughout my blogs I will spread awareness, share any lessons learned, and document my experiences – both hardships and adventures.

Within a matter of months, life as I knew it was completely torn down and built back up again in an almost unrecognizable way. It has been a tough journey so far and it’s important to me to have somewhere to channel everything into for therapeutic purposes as well as to reach anyone who may be dealing with medical hardships of their own. For those that have been following my Caring Bridge website, the information in this first blog may look familiar to you.

Symptoms

In January 2022 I started noticing some occasional neurological symptoms including tingling in my right hand and a shaky feeling in my neck. I already had pretty bad health anxiety and I made the mistake of researching my symptoms. Within 1 night I convinced myself I had Multiple Sclerosis. As the days went on I developed more symptoms: slight speech difficulties, issues with balance and perception, twitching and tremors, tinnitus, pain in various different areas, blurred vision, tunnel vision, focus and attention issues, sore hands, fatigue, headaches, and tingling down the back of my legs.

Taking Action

Of course my loved ones told me not to worry and surely assumed that I was just worrying too much. My primary care physician agreed, and I was initially told that this was likely just anxiety symptoms – I already have pretty high anxiety and now I was adding severe health anxiety to the picture. That didn’t sit right with me because I am all too familiar with how my anxiety presents. I self-referred to a neurologist to get my answers, and after a brief physical exam I was told by the neurologist that again this was likely just anxiety, but I requested a MRI anyways. The neurologist cautioned me that they are expensive, but I persisted with the mindset that my own peace of mind is priceless.

My MRI was in February 2022 and sure enough they found 3 lesions in the right frontal lobe. They initially interpreted this as a demyelinating disease and they highly suspected MS at that time. I spent the next couple months doing many blood tests, MRIs (including one of my cervical and thoracic spine), and a lumbar puncture. We were able to rule out MS and other autoimmune conditions through all of this testing. My blood work and spinal fluid all looked healthy and we were not worried about cancer at that time.

My neurologist presented 2 options: do nothing and continue to monitor my brain through MRIs to see if anything changes, or undergo brain surgery so they could biopsy my brain tissue. I opted for the surgery which took place in May 2022. My neurosurgeon highly suspected it was a low grade brain tumor. The first round of results came in shortly after surgery confirming that I was dealing with a Grade II Astrocytoma. In other words, a lower grade brain tumor. They had to send the tissue to the Mayo for further testing to determine if it was cancerous.

Diagnosis and Treatment Plan

On June 23rd, 2022 I consulted with a neuro-oncologist and was diagnosed with a cancerous Grade II Astrocytoma, IDH mutant. Brain cancer. It was a hard appointment and a hard day, which I have not really talked about. My plan is to try and open up about it more in upcoming posts because I think it’s important. I spent the next few weeks consulting with radiologists to learn about the 2 different types of radiation therapy. I decided to stick with Abbott and do conventional (photon beam) radiation. My neuro-oncologist also shared that after radiation treatment (about 6.5 weeks) I would begin oral chemotherapy.

Moving Forward

I started radiation treatment on August 15th 2022 right after I got back from my trip to Montana. My last radiation treatment will be September 23rd. Future blog posts will build off of this overview and this timeline. I am brand new to the blogging world and having my own website. I welcome any ideas, knowledge and suggestions from anyone who offers ☺

Coming up on Kiss My Astrocytoma: More blogging, a link to purchase a t-shirt that was custom made on my behalf, a link to purchase macrame art pieces (made by yours truly), and more!

♡ Hailey

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