Monday, September 16, 2013

My chemo brain (yes, it's real!)

Is chemo brain real? Yes it is! Learning this important fact is such a relief. Those of us who have undergone chemo have a real change in brain function that's observable on PET/MRIs. It means we're forgetful and foggy. I sometimes fumble for words, can't remember names, and even events. My children will sometimes bring up things I did, say, a year ago or even a week ago and I pretend like I know what they're talking about when oftentimes it doesn't even ring a bell. Case in point: Siena reminded me that when I first started treatment, I cut my hair really short just weeks before shaving all of it off. I seriously didn't remember it at all. After thinking about it a really long time, I think I sort of remember it. It's very hazy and I'm not sure that "memory" is even real.

Jenny, my @mpatient (www.mpatient.org) friend that I just met on Twitter and who lives near me, said that she was able to finally pinpoint which maintenance drug was giving her severe chemo brain: Thalidomide. I get an injection of velcade every Friday as part of my maintenance therapy. Since that will be ending for me in just a few more weeks, I'm hoping that Thalidomide will be taken off my medication list. If it is, maybe my chemo brain will go away. That would be so nice.

I just learned that my ex husband thinks that I need to get my ass back to work. In his opinion, I'm perfectly fine and I'm just lazy, enjoying the great life of ... not sure where he's going with this but in his alcoholic mind, who knows. But for anyone out there who thinks that fighting cancer is a fun walk in the park, let me assure you it's not. Every hike I take, every mile I walk, every trip I take is a huge sacrifice and a lot of hard work. I do it because it helps me fight this battle, keeps me emotionally and mentally healthy, and because I am going to embrace every single day that God gives me on this planet. No apologies.

In all honesty, I'm fearful of returning to work until my brain function is back to normal and before my long doctor appointments are well behind me. As it is now, my Friday appointments at Huntsman Cancer Hospital take up half my day. What employer is going to allow that? I need to lie down most every day for at least 30-45 minutes (sometimes longer) because I get that fuzzy strange feeling and racing heart that only being horizontal corrects. I have raging chemo brain and can't even fathom trying to juggle deadlines, deliverables, and expectations. If I get a small fever, I need to rush to the ER. And, thanks to my cocktail of drugs, I'm still severely immune compromised, which means I get colds at the drop of a hat. Some day I'll be ready to start a new job. But it's not now.

And, lastly, just because we cancer warriors might "look" healthy and happy and well, doesn't mean we are. Even during the midst of my stem cell transplant and major chemo, I never looked sick for one minute. I wore great wigs, put on fake eyelashes when I had no eyelashes, put on makeup and put on the cutest clothes I had. I looked as healthy as one could be. But, obviously, looks are deceiving. Here are a few photos taken at my sickest. 









Say what you will, I don't think I look like someone in the midst of chemo and who happens to be bald.

Every single thing I did back then took enormous energy and planning. I pushed myself because, more than anything, I wanted to look and feel normal, even if I didn't. Every time I got out of bed and stepped out of the house was my way of overcoming my illness and prevailing. To think that my accomplishment is looked at in contempt by my alcoholic ex husband is to be expected, as this is the same "great" guy who spit in my face on the day I was being scanned for tumors and kept up the bizarre verbal assaults throughout my two transplants. So while anything smacking of goodness and decency is lost on the likes of this "man", to the rest of you, when it comes to us cancer warriors, what you see is not necessarily what we feel. Please keep that in mind.

Odd that I feel like I need to justify any of this at all. I suppose my ex husband knows something that my oncologists don't. Or maybe he just needs another drink.

And so I'll end my rant. Sometimes rants are cathartic. I think this one was necessary for me today. I feel a little bit better already.