Chemo daze

I often refrain from writing anything during chemo weeks because I am miserable and have poison running through my veins and I am worried about what I might say that I then might regret later. But I am also feeling so antsy and bored and restless in my own skin and worried that if I don’t write, my brain will just turn to complete mush from spending my days lying flat in the bathtub while watching Real Housewives.

A lot of cancer patients experience a sort of brain fog throughout their treatment, and sometimes long after. This is a very real fear of mine. My brain is pretty important to me. I’ve worked hard on making it a useful one and it has served me quite well. I don’t like the idea of becoming distracted, forgetful, unfocused. Unable to complete a task as quickly as I once could have before. I want to keep my brain sharp. I don’t want to let it down. Unfortunately, I don’t have much choice over the matter. I am exhausted and my thoughts are cloudy, at best. The idea of reading a book or even watching an intelligent movie just seems impossible at this time. Even writing a coherent email is getting to be a bit difficult, as I’m sure a couple friends can attest to who received one over the past few days. Is it the steroids? The chemo? The sleep deprivation? The fact that I sit alone most of the day with nothing to entertain me except my weird, usually morbid thoughts? I guess it’s all enough to make anyone go a little crazy. I just really hope none of this is permanent.

The feeling of wasted time has really started to weigh heavily on me. I wish that I could be using this time to do something productive, something great and meaningful. But that’s not how this works. Cancer treatment isn’t a fun vacation. At least mine isn’t. Lately I’ve started torturing myself by looking at vacation destinations online. Warm places with beaches where people are happy and not bald and not pale and not peeling and not bleeding. Last night, after a terrible few hours of being sick and weak and crying so hard I started hyperventilating and nearly fainted on my toilet, I even resorted to watching youtube videos of rides at Disney World, trying to remember the feeling of being a happy kid who just wanted to meet Mickey Mouse and didn’t even know about the word cancer. The Dumbo ride was my favourite ride when I was a wee one. All it does is go round and round and that’s about it. Do you know how badly I want to be sitting in one of those stupid elephants, flying through the air right now? You have no idea.


A couple days ago, I was looking through all the comments from this blog. A lot of times, people add comments long after I’ve made a post, so I imagine most people who just read my current posts never see these comments. But I see them all. And reading through them made me quite happy, especially all the people who don’t know me but seem to be my biggest fans, or the people who tell me I am helping them through their own illness. So I guess I have been doing something sort of productive, even though it is hard to feel that way sometimes. So thank you for giving me that and for reading and supporting.

I got some great packages in the mail yesterday including beautiful handmade cards from a bunch of kind strangers, pins, magnets, a blanket, a book. Last week I got a lovely robe from a friend of a friend that she sewed just for me and I have worn it every day since. I love these things so much. I know I keep expressing it over and over, but I want people to know that it is all so appreciated, even when I am just a big sad sack of moodiness and gloom like I am right now. Although I managed to muster up the energy to go to my mail box today and all that was there was junk mail and disability-related papers, so that was a bit of a letdown. Hopefully this means I will get double presents tomorrow. I have become super greedy with my expectations of receiving tokens in the mail. I have no shame admitting it. I have no shame admitting anything right now. Like the fact that moments ago, I attempted to sneak a candy bar from the top shelf of my cupboard by almost climbing on a chair, and then realized I would likely stumble off the chair and smash my head on the table, and the idea of dying that way after everything I have been through just seemed a bit ridiculous, so I abandoned the plan altogether.

Hey, look at that, my brain still works.

UPDATE: My mom just sent me an actual video of me on the Dumbo ride from many moons ago. I am very impressed that my parents figured out how to make a movie file from our old Beta footage. Thanks guys!

To do or not to do

This is how I'd look right now, if I were a cartoon dwarf.
Oh, Grumpy. I feel ya, pal.

Many people believe that when it comes to cancer, things are fairly clear-cut. You have this type of cancer, you follow this type of treatment, and you do whatever the doctors tell you to do. Unfortunately, this is very rarely the case, although it sure sounds nice. Cancer is all about unknowns and grey areas. This can be especially true when you are a young patient, as many of the studies and numbers do not necessarily reflect people of a younger age, who are often “high-risk” – the fabulous term with which I have been labeled by doctors. Of course, there have been many advances in cancer research and treatment. But even so, sometimes there is not enough data and information to work with, and ultimately, the patient is the one who has to decide what they feel most comfortable with and how they want to proceed in many areas of their cancer treatment.

As a control-freak, you would think it would thrill me to get to make choices and not be told what to do in a given situation. But no, my friends. That is not the case. You see, when it comes to making decisions that can affect your ability to be alive, it’s not such a great feeling to be in control. In fact, it’s quite a lot of pressure, and frankly, a pain in the ass.

Throughout my cancer “journey” (barf… someone find me a better word for “journey”), I have had to make many impossible decisions. Decisions that affect my body, my health, my chance of survival, among other things. This past week, I have been confronted with yet another huge decision in regards to (what feels like) my never-ending treatment. And again, doctors can give me the facts, but not advise. It is in my hands. My stupid, sweaty-palmed hands.

As a young girl, I was an excellent student. Straight A’s all the way, occasionally referred to as “The Brain” or “Brainer” by my schoolmates (not the coolest nickname one could possess, but I suppose there are worse). I would ace a test or get accolades from my teacher for a story I wrote, without putting in a great deal of effort. This continued throughout university, where my roommates would get frustrated at my ability to write an essay or finish an exam at a dizzying pace, while they would still be trying to come up with a thesis statement.

The student inside me, who has been locked away for years, has returned as a result of my new current interest: curing my cancer. I spend endless hours reading studies that I really have no business reading, in that I usually have to google every other word to make sense of the terminology. I read articles, message boards, books, trying to stay on top of all the current and relevant info pertaining to my particular case. Trying to search for the answer to whatever question I am currently faced with.

But unfortunately, unlike school where I could essentially bullshit my way into getting a great mark (one teacher in high school actually told me I did that and I took it as a very high compliment), I can’t do that here. I can’t make the answers appear. I can’t pretend that I know them all. Because no one does. Most of it is just a crap-shoot, where you make a decision, pray it was the right one, and move on the best you can. If you can.

Today I feel tired of making these big decisions and trying to be the all-star cancer student. I feel over it. The Brain can only handle so much. As my mother said to me earlier, I should be making decisions about what colour nail polish to wear, not trying to figure out whether X or Y may or may not kill me. (Note to self: must paint nails.)

So, all this to say, I’m feeling a bit grumpy today. Grumpiness is another unfortunate side effect of cancer. And, as the cherry on top, tomorrow I get to do chemo #3. They better have a good stock of popsicles this time. Although hopefully I won’t have to make a choice between flavours. I don’t need anything else on my plate right now.