So what’s really going on with my brain?

Warning – a bit grim but this is my life now. I will keep capturing this experience for my sake but will stop wildly sharing on Facebook. (Update – after a few friends begging not to stop, I continue to share on FB – just ignore or unfollow me if you don’t want to see it). But if you are interested in learning more, follow my blog and stop by anytime. The link to blog is on my Twitter and Instagram as well. 

Surprises kept coming. Until the surgery, I was preoccupied with the procedure itself and absorbing the fact that my own cells started to go a bit rogue without telling me in some unexpected way like seizures or fainting or loss of vision/movement. Rambunctious cells but good girls for not taking me down by surprise – like having a seizure in the middle of nowhere in India or while harassing soccer fans in Rio – or possibly driving through rural Morocco. None of these places would be ideal for a brain meltdown, so lucky me!

The hypothesis was that this is a meningioma – a rather common for women as brain tumors come and is mostly benign. One thing I am learning that there is no certainty, everything is “likely”, “looks like”, “we think” so you are never really 100% sure of anything. My black/white mathematical approach is not working here – aggh – I hate 50 Shades of Grey – why can’t you just be clear and definitive?

My results were sent to MD Anderson Cancer Center in Houston for thorough analysis. This freaked me out a bit, my “little nurtured friend” couldn’t be something that Atlanta could analyze? It had to be something special. But apparently MDACC is the place to be when you have a brain tumor.  A new doctor was also introduced in a hospital, neurooncologist, which again made me very suspicious. She brought a whole package with intro on hospital, practice and lots of stuff on how to deal with cancer. What the heck? I literally threw it out as far from me as possible – not ready for this right now. Let’s deal with the surgery first. Are they suggesting something here or is it just a possibility?

It took 3 weeks for the results to come back and I didn’t give it a second thought. Just went through the holidays and recovered pretty well. Well, the storm was about to hit and it wasn’t a bomb cyclone.

Where we are now:

Oligodendroglioma. That’s the formal name. Relatively common as it comes for brain tumors (still only 2% of all cancers are in brain, and only 4% of all primary brain tumors are these), slow growing. Any tumor that is sourced from brain cells is called glioma.  Mine didn’t actually start in the membrane/dura as they originally thought, so I have a glioma. It actually grew in the direction of the cover of the brain vs. into the brain – which is what normal oligodedroglioma should do – but also why it appeared as meningioma to everyone. It is not benign but not super bad either – of course, I didn’t hear the second part – just the not benign part. Honestly, I felt like I was watching someone else having this discussion from the corner of the room – this couldn’t be us. To top it, mine is in such an unusual place (growing out of the brain to the dura) that they want to write a case about it. OK – my translation at that moment:

• shit, is this cancer – what are you saying exactly?
• growing out of the brain, not inside – sounds good, no?
• case study – really? This was not on my 2018 resolution list – “become the brain tumor case study” – do I need to be THAT special?
• unusual is not good – will that mean they don’t know enough or will use me as a trial and we are just going to be throwing random cures on it to see what sticks? Why couldn’t I have something they know A LOT about?
• I should have paid more attention in biology in high school – this is all medical gibberish to me – lost
• what now?

Not kidding about the medical gibberish – we were in mitochondria, enzyme, cell, chromosome vocabulary. However, I have been very impressed by the depth of the science and how much they know about these nasty tumors. They don’t just look at it under microscope and say a random latin name – they actually go and do a full molecular make up of the tumors, and give you 6-10 biomarkers that define how the tumor is behaving or its personality. Those markers define, based on previous proven cases, the treatment plan for yours specifically. I will get into the full introduction of my tumor in a next post – as it gets pretty medical and I am still figuring this out. Oh – and meet the tumor that is no longer there but still creating a bit of a havoc 🙂 – yes the white! It is not 3D, so shows as us a ball but it actually is a flat pancake – still, not a tiny one, ah?

Net net, we are on a spectrum of cancer so yes, I have brain cancer. All visible tumor was taken out and removed. Possible invisible cells could have been left behind, so I need radiation and chemotherapy to make sure they are all gone and don’t come back. I am on a life journey of monitoring my brain, regular MRIs to make sure nothing is coming back or growing again.

Physically, I feel normal – and it helps with the mental part. For a while and still a bit – I can’t even pronounce the fact that I have brain cancer. But getting used to it and the fact I am not feeling sick, I am functional with no loss of any capability – and have great prognosis helps to keep it away from the gloomy thoughts. I am starting my treatments next week – which will be a whole another story – so home for another 6 weeks as it may be a bit intense.

Drum roll…….. my life-saving glasses are here! I also signed up for a gym membership as I am bored out of my mind. And using this time to get some girls time (and boys!)…before I see any side effects from the treatment.

My new glasses that started it all

Signed up for gym!

Girls day in a theater