I know this isn’t the most glamorous topic and never in a million years did I imagine myself writing a blog, nevertheless one about brain tumors, yet here I am. And here you are. Judging by the fact that you are reading this you must either be my immediate family, a close friend or you might be suffering through some horrific medical diagnosis like a malignant brain tumor. If you are the latter, I hope my blog helps you make sense of some of your emotions, gives you peace that your body pains and ailments are not unique to you and are most likely not permanent, and gives you comfort that things will get better and you can keep living your life in the process.
When I was diagnosed, I spent days researching about my condition – yes I know, terrible idea. Don't do this. But then I started looking for blogs and trying to find other people who had a craniotomy for a tumor resection or maybe someone who had complications from the craniotomy like I did – cerebral spinal fluid leak anyone? No? Okay.
I tried to find people who experienced steroid withdrawal and learn how they weaned off of them. I wanted to see if anyone else had joint pain, what stretches or exercises worked for them and when they started exercising. I searched for what foods helped with recovery, what supplements would help me recover faster, what improved hair growth, and how I could keep all my hair from falling out during my brain radiation. The list goes on and on. Unfortunately, I can’t say the same for the amount of blogs out there.
There were a handful of blogs about meningiomas, but they were all benign tumors. And while that’s wonderful for them (seriously, I mean that with all my heart), that simply wasn’t my experience, nor could I relate to it. I was diagnosed with a Grade III anaplastic meningioma in my brain at 36 years old during COVID. I had an emergency craniotomy and I experienced complications from the surgery that put me back in the hospital. After a difficult recovery, including a steroid withdrawal and a slew of side effects from the steroids and anti-seizure medications, I underwent 6 weeks of radiation, 5 days a week.
No blogs about any of that.
Maybe because its so rare, which it is – only 200 people are diagnosed with it in the US each year. Or maybe because its such a painful and personal experience, no one wants to document it – I get it, writing about such a traumatic personal experience is hard. Maybe people just want to move on and forget about this chapter of their lives – I can relate to that too. I often wish I could forget and never look back. Buttt, that's just not who I am, and my better sense wouldn’t let me keep all this in and not try to help someone else going through the same thing. I feel like I can’t go through what I went through and not share it, not try to help people. I was so desperate to find someone I could relate to and I never found that. I really hope I can be that person for you.
If you are dealing with any type of cancer diagnosis, undergoing treatment, recovering from treatment, or are in remission, this blog is for you. I hope you feel at home here, and that somehow, by sharing my experience, I can provide you with hope, support and valuable information.