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!

Side effects may include the following

I’m tired.

This week has been a long one. On Tuesday, I was at the hospital almost the entire day, dealing with various appointments and consultations, and an unfortunate mix-up with my blood. I had to hear more things about my “prognosis being slightly worse” because of my age and “greater chances of it coming back” because of X, Y, and Z, and blah blah blah, and again process the idea of more treatment, which is starting to feel never-ending. It is difficult not to get upset after these types of conversations. My typical routine is to get through it, keep myself composed, ask all the right questions, and then go home and scream and cry and shout “I don’t want to dieeeeeee!” and hyperventilate for a minute or two. Then after exhausting myself, I usually put some crap on the TV like The Bachelor (my saving grace as of late) and distract myself until the next wave of panic hits for one reason or another.

Needless to say, it is exhausting. I keep telling people that I am bored. But it’s not the bored you are thinking of, where I have nothing to do. In fact, I often feel like I have too much to do and not enough time. It is more a case of an overall boredom with cancer. I am bored of dealing with it, talking about it, stressing about it. Bored. I want to be focused on something else. I would rather be complaining about the cold that many people on my Facebook seem to have. I would rather be staring at a wall, watching paint dry, or scratching my fingernails across a chalkboard. Essentially, I would rather be doing almost anything. That is where I’m at.

I have been experiencing some bad pains in my back the past couple days. For the average person, back pain would be of little concern. But anyone who has or had cancer can tell you that any new type of pain can be a cause for alarm. It is nearly impossible not to quickly jump to the conclusion that bad pain means the cancer has spread. I wish my brain did not go there, to such a dark place. I wish I could brush off pain the way other people are lucky enough to be able to do. But I can’t. Will I ever be able to? I’m not sure. But for right now, I am really hoping the pain gets better, because I don’t need a new worry to add to the list. The list is getting awfully long, my friends.

Tomorrow I go for my next chemo, which involves a new regimen. The infusions will take a total of 5 hours. With the typical wait times, I will likely be in the hospital all day. Please feel free to suggest fun things to do while sitting in a chemo chair for 5 hours.

The new chemo involves a drug which is typically known as one of the more horrendous chemo drugs one can receive. Fun possible side effects include neuropathy, debilitating mouth sores, terrible body pains and aches, loss of nails, and extreme fatigue, among others. As my oncologist said, I don’t think you’re going to like it too much. I should mention that over the next few days, or possibly week, I likely won’t be too great at responding to any emails or messages. Know that if I don’t answer you, I am most likely lying under my covers in the dark listening to some sort of “Songs for sad emo wussies” playlist on Songza.

I will also be starting my first round of the drug that will hopefully have a life-saving effect on me. And in addition, I start my clinical trial drug, where I will either be receiving a real drug, or a placebo. I will not know. Please cross your fingers for me that I receive the real deal. My chemo drug also has a tendency to cause severe allergic reactions, which is why I am currently hopped up on steroids and will be for the next couple days. So please cross your fingers as well that I don’t have a severe reaction when they start the drug. In fact, cross your toes too, if you have the ability to do that. Lots of happy thoughts tomorrow, if you can spare some.

On a slightly cheerier note, this week was a really great one in the I’m-a-cancer-patient-so-I-get-lots-of-gifts arena. I received a handmade tshirt from an old schoolmate (and former prom queen, hollaaa!) who now lives in New Zealand. She somehow created a stencil of me wearing a scarf and incorporated a cupcake theme and painted it on, and the whole thing was beyond impressive to me. I wore it to the hospital yesterday, proudly. I also got another package from the The Canary Islands (yes, many of my friends live in weird, exotic locales) which included a super soft sleep mask that I will likely bring with me tomorrow in hopes that it induces a nice chemo coma. And I got some more pretty nail polishes from my new pen pal, who volunteers to send me things through an organization, out of the goodness of her kind heart. On the food side, I have some soup, mashed potatoes, cookies and more goodies waiting for me. You all have no idea how much these things brighten my day. Well, hopefully you do. Because I just told you.

That’s all I wish to share for right now. Think of me tomorrow, with my hands and feet submerged in buckets of ice (something I have to do to try to prevent finger and feet problems). Hopefully that creates an interesting picture for you.

See you on the other side.

Today.