Tag: fatigue

The daily grind

Posted on by Steph

So I think this is the longest I have gone without blogging since this all started. And that is because there hasn’t been much to say… which is good. Uneventful is good. I have had enough excitement to last for a long time, and I’m okay with boring and mundane for a bit.

Last week was my first official full-time week at work. It’s strange, because I work in a new environment, where I’m fairly certain many people aren’t aware of my history. Sometimes I want to respond to emails: Hi, I had cancer, and you should know, considering the effects of my treatment on my brain function and how extremely tired I feel all the time, it’s pretty amazing that I am managing to respond to you and give you even a half-coherent answer to your question, so please say “thank you” and give me a cookie for being awesome. But I would probably seem insane, or get fired, so I haven’t followed through with my urges to be “that crazy girl” just yet.


Speaking of being the crazy person at work, this guy is my hero.

There have been some days recently where I have felt so fatigued that I am convinced something is wrong. I no longer really know the difference between regular tired and cancer tired, because I have been cancer tired for so long and have not functioned in normal day-to-day life for quite some time. I can’t remember if this tiredness is just something average, healthy people feel from lack of sleep, or a long day at work. I guess eventually I will have to start trusting my body again and not think that every slight malfunction is a sign of the Big Bad Cancer. But my body broke that trust in a pretty major way, and I think it will be a very long time until I can forgive it and move on. I’m holding a bit of a grudge, you might say.

Lately I think about cancer and recurrence a little less. I am too busy with so many other things. As I get further away from it, it seems more absurd to think about the cancer coming back. No way, that can’t happen. Look at me, I’m fine, I’m great, everything will be great. I feel these things more and more now.

But then just as quickly, I’m hit again with reality. Wait a second. There’s a total possibility that I’m not fine and that this possibility will be confirmed in the near future and that I’m really just a dead woman walking. Sometimes I feel like I’m fooling myself, like there’s no way this bit of normalcy is going to last. I go so far as to imagine my doctor giving me the news (again), yet this time, it would be paired with the whole cliche, “You have this many months/years to live” spiel. The fact that that could actually happen is really quite terrifying.

And then I snap out of it. Back to my life, where I have bills to pay, dinner to make, a job to do, people to see, places to go, and all that good stuff. Because you see, in a normal, boring life, there really isn’t much time to think of things like cancer and dying.

And that’s just fine by me.

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Hot town, summer in the city

Posted on by Steph

Today I completed radiation #15. 10 more to go. Woohoo!

My skin has started burning a bit more, and I have some very unattractive little red bumps. I also have started to notice that my scar near my armpit is stinging. So that’s not fun. But all in all, still not too bad.

Whenever I get a bit frustrated, I remind myself what chemo felt like, and I think, At least I’m not sitting on the toilet with my head resting on the sink while my body shakes and my nose bleeds and my bones throb. And then I immediately feel better again and able to deal with whatever minor discomfort (in comparison) I’m faced with at present time. So thanks, chemo, for giving me a super unpleasant and unique perspective on what it truly means to feel ill.

Today I was a bit of a grumpypants. The weather where I live has been unbearably hot, which is not ideal when you’re receiving daily burns to your skin and have to travel every day by crowded public transit without air conditioning, back and forth to the hospital. On my way to my treatment today, I sent the following texts to my sister:

Sooooo pissed right now on fucking streetcar fuckkkkkk!!!!
Sweat is pouring down my face and back and I’m going to be late cuz it’s just sitting in traffic.
I want to murder everyone!!!!! Everyoneeeeee!!!!!!

So, yes. You might say the daily grind of going to the hospital is getting to me a tad. I even started to feel a bit sorry for myself today during my treatment and almost cried while I lay on the table, I suppose from the combination of exhaustion and overheating. I thought about how I haven’t had a break from this cancer business in over nine months now and I could feel the anger starting to boil from deep within. But I realized that crying while having a tube in my mouth and a plug on my nose would likely make matters a lot worse, so I chose to stifle my emotions for the time being.

10 more to go. I think I can, I think I can, I think I can.

To give myself a bit of hope and something fun to do, I’ve started collecting several photos of ladies with short hair, in the hopes that eventually my hair will grow long enough to have some sort of actual style vs. the buzz cut look I’m forced to sport right now.

Every time I see a short-haired girl out on the streets, I stare at her and oooh and ahhh. I’ve become a tad obsessed. To the point that I now even feel that people with long hair are a bit boring. I’m not part of their club anymore. I’m part of a new club, full of fierce, bold women who’ve shorn their long tresses in an act of defiance against what society deems to be feminine and pretty. Or, who’ve lost all their hair to cancer and chemo and had no choice in the matter.

Whatever. Almost the same thing.

Here are some of the photos I’ve collected.


I never thought that I would have hair as short as any of these, but now that I am, I am strangely excited about it. I just want it to grow. At lightning speed. Is that too much to ask? I think not.

In conclusion, I want the heat to go away, radiation to end, and my hair to grow. Whaddya know, three wishes. Now all I need is a genie.

Come on, come on, and dance all night
Despite the heat, it’ll be alright

An update

Posted on by Steph

Update on Steph for those who truly want to know the mundane details of my life right now. For those who prefer the happy dancing cool cancer chick moments, feel free to skip this one for now and I hope to provide some more of that soon enough.

-I’ve been ignoring most emails and phone calls. It’s nothing personal. I have very little energy and it’s been another rough week, probably the worst yet, and I’m finding it hard to talk to anyone right now. But as always, I appreciate the love so much and really really hope to have at least one or two friends after all of this.

-I have styes on my eyes. I’m sure Dr. Seuss would be able to make that into some sort of interesting storybook, but in reality, it’s not very exciting. Itchy. Red. Styes.

-My skin has turned grey. Not pale, but grey. I used to think being pale was kind of lame, but now grey takes the prize.

-I took a walk today. Spring has sprung. I’m still wearing a black hood with big sunglasses because I can’t really bear for anyone to see my face right now. I seem to get stares wherever I go. Sometimes I just want to shout at strangers on the street, I have cancer, it’s not contagious, get over it. I have come to realize how oblivious we all are to other people’s suffering. How we just walk by, stare, and ignore. I’m sure I have done it a hundred times. Now when I see someone who I think has cancer, I just want to hug them and cry and ask them to come to my home and build a fort with me and hide in it.

-I haven’t had a good sleep in a long time. Between my nightmares, body aches, hot flashes, and the raccoons that seem to enjoy scratching under the window, I can’t seem to make it through the night.

-I have collapsed into a puddle of tears on several occasions the past week. I’m not sure where it is all coming from, most likely exhaustion and the fact that I am almost completely cut off from the outside world and am in some form of pain most minutes of my day. In a moment of sobbing hysteria, I asked my husband if he could cover all the mirrors so I wouldn’t have to see myself anymore. It made me think of all the shiva houses I had been to when I was younger and how I would stare at the foggy mirrors. But I have no idea what people spray to fog the mirrors and am also far too vain to stop looking at myself, so my mirrors remain as they were.

-I watched The Princess Bride last night and it was the first thing in awhile that made me laugh, so thanks to Rob Reiner and all who were involved if you ever read my blog.

-I ate some beets today. Straight out of the jar. It’s a crazy, crazy life.

Things I’m grateful for today:

The sunshine
The comments people leave on this blog
Toast
Health insurance
The few eyebrow hairs I have left
Movies
My friend Rebecca who always says “that is so so shitty” whenever I describe the gross and weird things happening to me, instead of “it’s ok, you can do it!”
My friend Lily who buys way too many things for me
My good friends who check in on me constantly and stick around through the dark days
My husband who lets me soak through all his shirts with my tears and who tells me I’m pretty when I have styes on my eyes
My mother-in-law who sends me photos of rainbows
My parents who do everything
My siblings who are the only friends I see anymore
Everyone who sends me cards and nice things in the mail
The fact that I’m still here
Tomorrow

Looking in the mirror

Posted on by Steph

Last week I think I hit a new low of sheer misery. The fatigue that comes with chemotherapy is truly cumulative, and with each new treatment, it is growing increasingly difficult to do any of the things I once enjoyed. Such as taking a walk. Or lifting my laptop. Or lifting my head. The tiniest things we all take for granted have become incomprehensible to me. Memories of the past. Of a life I once lived, where my body would do whatever I asked of it, with ease. I feel as though I have been thrust into old age almost overnight. My bones ache when I try to move them. My body cries out for rest after walking up a few stairs. I wake up at night with hot flashes, my cheeks burning, thanks to the menopausal effects of chemo. Creases are starting to form on the outer corners of my eyes. My stomach and face are bloated constantly from all the drugs, making me look like I am five months pregnant. I can’t follow a basic conversation without losing focus, or feeling like I need to shut my eyes. I am an old lady. At the ripe age of 28.

Chillin with my Goodnight Moon bunny in bed, where I spent all of last week. I am looking super cancer-y these days. Yikes.

It has been difficult for me to look in the mirror lately. I don’t like what I see. A bald, puffy face, with red patches all over my cheeks and glossy eyes. Is that really me? It is hard to feel healthy or strong, when the image reflected back at me is anything but. Lately I am starting to feel as though I will never get my old self back. I can’t imagine having life in my face again. Or having hair. It seems like appearance should be relatively low on the list of things to feel bad about, when you’re dealing with all the crap that comes with a cancer diagnosis. But it is proving to be one of the biggest challenges for me. Looks aren’t everything, but when you’re already feeling just about as low as a human can feel, it really does add insult to injury.

It is hard for me to look at pre-cancer photos of myself now. I feel very disconnected from the girl I see. She’s pretty, and healthy, and happy, and completely unaware of what is about to happen to her. It’s as though I am looking at someone else’s life, even though I know she is me. Did I really do all those things at one time? Did I really look like that? Did I really have hair? I want to go back into those photos, just for one minute, just to remember what it’s like, to be happy and pretty. To soak up those moments. Because they are starting to slip away from me.


I hope that eventually I can start feeling better about what I see in the mirror. View my reflection as an image of a brave warrior, rather than one of a sick cancer patient whose body has been continuously cut, poked, and poisoned. I don’t want to be that girl who cries when she looks in the mirror. I have never been that girl. I refuse to let her win. And anyone who knows me knows I always get my way.

Chemo daze

Posted on by Steph

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

Posted on by Steph

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.

FAQs

Posted on by Steph

As part of this whole cancer thing, I get asked a lot of questions. It can be tiring repeating the same thing over and over, so I’ve decided to make a list of some FAQs with answers.

How did you find the lump in your boob?

I was sitting on my couch, alone, and touched my boob. I was not doing any sort of self-exam. I just touched it, and felt it, and knew. Moral of the story: start getting gropey with your breasts.

You’re so young to have cancer! Do you know how young you are? How do you have cancer?! You’re so young! Are you aware that you’re young?

I have never, in my life, been more aware that I am not an old person. Young people get cancer. Sadly, I am not the only one. It’s a very crappy fact about life, but nonetheless, there it is.

But at least since you’re young, you’ll definitely be fine.

I really like this idea. But unfortunately, that is not how it works. In fact, cancers tend to be more aggressive in younger people, which is the case with me. But don’t worry. I’m pretty aggressive myself.

How did you get your cancer?

I don’t know. No one knows. That’s not really how cancer works. It is caused by cells dividing abnormally. I didn’t tell my cells to do that, they just did.

But surely you must have done something? Eaten something? Stepped in something?

Some people want to believe that cancer patients caused their cancer in some way, so that they feel it will never happen to them. Did you know that there are vegan, all-star athletes out there with cancer? And that there are people who smoke a pack a day and eat burgers all day and do not have cancer? Although there are certain risk factors for certain cancers, it is often random and unfair. Two risk factors for breast cancer are being overweight and drinking alcohol. I am a pretty far cry from obese, and do not drink. Ever. How do ya like them apples? In fact, the largest risk factor for breast cancer is simply being a woman. Didn’t have much choice with that one.

Did you know that if you drink this special tea, or go to this website, or jump up and down 3 times, you can cure your cancer?

I didn’t know that! What a dum dum I must be. I will definitely consider stopping my treatment and ignoring the opinions of my doctors and decades of medical research and evidence, in favour of the advice from some website full of grammar mistakes and sex ads. I’ll be sure to let you know how it goes.

Did you know that sugar will cause your cancer to spread and kill you? Stop eating cupcakes, fatty!

There are several myths about cancer that circle the internet, which are completely unfounded, and only serve to stress the shit out of poor souls like myself. What each person chooses to believe, is his or her right. It is also my right to eat or do whatever I want, without having to justify it to anybody. Please know that I am extremely well-informed and not actively doing anything to harm myself. You can trust that no one wants me to stay alive as much as I do. For those who are truly concerned, I can promise you I am not shoving my face full of cupcakes all day. Although I could sure use one right now.

Did you get my message/voicemail/email/text/comment/card?

Yes, I did! I get a lot of messages every day, which I love. It makes everything a bit more bearable. I don’t always write back. Sometimes I forget. Sometimes I am tired. Sometimes I have nothing new to say. But I read everything and often share your nice words with my husband, and we’re both very grateful for so much support. As someone who loves getting snail mail, it is so fun to open all the cards I get. When a crisis happens in your life, you learn who your true friends are. Who will really be there for you. You also learn that you have a bunch of family you’ve never met who are really awesome. And that there are strangers all over the world who are caring and kind. People are, generally, pretty great. I can attest to this, wholeheartedly.

Are you a writer for a living?

Nope. I was published in the Toronto Star when I was 10 years old, and figured I hit my peak. But I have always written, for fun, and been encouraged by others to do so. Because of this blog, I now have many people encouraging me to write a book. So maybe I’ll do that. Stay tuned.

What does chemo feel like?

I’m not sure if anyone has actually asked this, but I know people wonder. And I don’t know how to explain it. Just thinking about describing it makes me feel nauseous. It’s not pleasant, to say the least. One thing that is difficult to describe is the fatigue. Everyone knows that chemo causes fatigue, which often lingers after treatment is completed. I remember thinking, being tired isn’t so bad, I’ll just sleep, I like sleeping. But it is impossible to compare the feeling to being “tired”. It is more an overwhelming sensation of weakness, spread across my entire body. Simple things, like boiling a pot of water, become really difficult. And often, sleep doesn’t make it better. As someone who really likes words, I can’t think of a better one right now than “yucky”. Chemo is really yucky. That’s about the best way to describe it.

When will you be done with chemo? And then is that it? You are cured?

A lot of people think that cancer treatment is simple. You pump yourself full of some drugs, and then you’re cured, and you move on with your life. For some people, this may be the case, but for most, it simply isn’t so. Each type of cancer is different and requires different types of treatments to keep it under control. Once the treatments are finished, you pray and hope that they worked and that the cancer will not return. In my case, I will hopefully be finishing chemo in two months. But because of my subtype of breast cancer, I will still need to get drug infusions every three weeks at the hospital, for a year. During this time, I will also be part of a medical trial. Then I will be on a different kind of drug, with its own fun side effects, for many years after that, to try to keep the cancer at bay. Somewhere in between, I will have at least one more major surgery. I will also spend the next however many years fearing the recurrence of my cancer, as much as I will try to block it out. It is most likely to recur in the next two years and the anxiety over that, at least for me, is a very real and difficult part of the struggle. So in summary: it is very hard for me to answer when people ask when I’ll be “done”. There will be milestones, most definitely, and I will try my very best to enjoy and celebrate each one. I’ve already conquered a few. But the road is a long one for me. Hopefully one paved with many cupcakes, now that you have learned that they will not cause my demise.