The weird thing about a grade 4 Glioblastoma Multiforme is that even when there’s no immediate evidence of a tumor in your brain, you still have to continue fighting it as though it’s there, hiding and ready to pounce out from behind the curtain at any moment. Actually, even with lower grade primary brain tumors, you have to treat it so it doesn’t BECOME a grade 4 GBM. Which means that I intentionally ingest toxins each month in an effort to keep the lurking beast behind the curtain – or better, behind a locked door that can never be unlocked again.
Because my platelets started off low, the chemo (Temodar) will drop them below an acceptable level pretty quickly. Which is why I ended up skipping a month of treatment. During that month off, I felt pretty awesome. I had energy and was able to exercise regularly (meaning I walked) without trouble. My thoughts seemed more focused and clear. My long-term memory seems to be in pretty good shape – can’t say the same for my short-term memory, but that’s ok. I went on vacation and relaxed. I was able to chaperone a field trip with my son’s class. Generally, I was feeling more like myself – the self that I remember – than I have in a long time.
I started this month’s chemo on Tuesday night. That puts me at day 4 (I just had to count that on my fingers). I felt so good last month that I forgot what it was like to feel foggy – to have to count 4 days on my fingers. I forgot what it was like to feel nauseous constantly – to have even the thought of food make me cringe, but know that if I don’t eat, I’ll continue to feel nauseous. I forgot that simply climbing the stairs would sap me of energy. I forgot what a burden it is on my husband to have to help with the kids in the morning and then come home to make dinner.
I thought I’d prepared better this time. I knew I needed to stay on top of my anti-nausea drugs. I knew I needed to have easy food on hand – for me, sourdough toast and peanut butter and vitamin water zero become staples. I knew that if I was feeling good at any point, THAT was when I needed to prep dinner or get a load of laundry done or just eat – whatever didn’t make me gag at the thought. I knew that I might not get a lot done – I might need to just sit and read or watch a movie or take a nap – and I had to be ok with that, allow myself to get nothing done. And yet, I sit here feeling slightly shocked at the nausea and feeling guilty for all that I feel and all that I have not done.
He conquers who endures. ~Persius
Let perseverance be your engine and hope your fuel. ~H. Jackson Brown, Jr.