How She Goes
I think the most frustrating one for my family is the short term memory loss. It’s also been really hard on me because I’ve always been the one to remember everything. Plenty of times my kids or husband will tell me I’ve told them things numerous times, but I assure you, in my mind, they have not (oh, but I promise you they most definitely did). It started off with little things. Something we would have talked about weeks or months ago, suddenly gone. No recollection. I am at the point now where sometimes, especially if my stress levels are high, I can forget what you’ve said to me in a matter of hours, sometimes even minutes. It certainly is a challenge.
Something not as new (and if you’ve seen me in the last year and a half, you know what it is) is how my face has been affected. The tumour is causing a problem with my eye and my mouth. It’s causing quite the pullback on the left side of my face which results in my lip being pulled back and my eye to droop. I am getting Botox injections every three months around my eye, the middle of both of my eyebrows (because it would look kind of scary if only one eyebrow was raised), around the left side of my mouth and in my neck. It has made a difference, but it does wear off. Thankfully, since I need Botox to improve my quality of life, it is covered. Could you imagine having to pay for Botox every three months? Also if you look closely, you’ll see the muscles on the left side spasming. The only time I feel it is a couple of weeks following those Botox injections, and then I don’t feel it anymore. But it’s still spasming away
I then began to have a problem with my legs. It felt like electrical shooting pains in my legs and hips. It reminded me of when I had my spinal tap. While undergoing that procedure, I had a nerve graze the needle and my hips and legs shot up and jerked and writhed in pain. My husband and a nurse had to hold me down as I sobbed and screamed. I’ve had natural childbirths. And I can tell you that I would do that again, hands down, over another spinal tap. Convinced it was a nerve problem, my family doctor put me on nerve pills and got me to consult with my oncologist. The latest MRI did not show anything that could be related to the tumour causing nerve pain, so I was referred to talk to my neurologist at my next Botox appointment.
Out of all of my care team, my Neurologist is my FAVOURITE doctor. Dr. Leckey has been the easiest to talk to. He’s funny and generally cares about giving you the best appointment he can, even if it’s not a good appointment. He was the one to tell me I had a brain tumour and had to go see oncology. I couldn’t imagine having a different doctor deliver that news. Best bedside manner I have ever received. Dr. Leckey wasn’t informed from oncology that I was having this problem so he checked me out and concluded that I have a spasm problem. It’s funny because I was noticing more ticks and spasms in other parts of my body. My left side still being the weaker, more affected side. I started new medication that seems to be working okay. I still have my bad days, but it’s not near as bad as it had been.
Since being off of active cancer treatment, I’ve also had a slip and some trouble with my bipolar disorder. I’ve been having a difficult time getting stable. It’s pretty easy to hide in depression through treatments, but man, it’s been a challenge to keep the mania settled since treatments have stopped. I’m now doing weekly therapy sessions and cracking down on my medications and timing them accordingly. I know it will get better and easier, but it’s certainly been trying.
So that’s it. For anyone wondering how I’m doing or how I’m affected by the tumour, this is it. This is life living with brain tumour. I can only keep hoping that I can push through and keep getting MRI’s that have not changed. I get to enjoy this summer off of treatment, so the sun won’t feel like it’s chosen me personally to sacrifice. In two weeks, we head off on our family trip to PEI for a week. My husband had put the money aside for a trip, which we were planning to take alone, but I couldn’t stand the thought of not taking the kids somewhere. They suffered too this last year and some. They had the hardest time of their lives. And since I still have no prognosis and could get a bad test result back at anytime, I’m choosing to make as many memories as I possibly can, and experience as many new experiences as I can. In the clear til August 22 at least, so let’s get this summer started!
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