I feel better

I received a lot of really kind and encouraging messages after my last post. I know a lot of people out there are concerned about me and I didn’t really have the energy to respond at the time. So I wanted to check in with my faithful followers and let you all know:


In fact, I am doing quite well, both emotionally and physically. As quickly as the sickness and misery from the chemo seems to hit me each time, there is also this wonderful break where I bounce back and wake up from the nightmare. Each time, it gets a bit worse, and each time, I am in such agony and my emotions become completely warped (especially this last time, which I attribute to the high dose of steroids I was on) and I don’t believe it will ever end. This past round, I was convinced that I was dying and would never see a good day again, despite what anyone told me. The combination of feeling awful and being on strong drugs really does crazy things to an otherwise (mostly) sound mind.

But sure enough, it passed, and I didn’t even notice it happen. The puffiness in my face and bloating in my stomach seemed to go down, which I was thrilled about, as I had convinced myself I was becoming obese from laying in bed too much. But I now believe it was steroid-induced, so that’s certainly a nice treat. The idea of being fat and bald had me feeling a bit down.

I also have been gaining my energy back, which feels great. In fact, on Friday, I went on a mission with the help of my mother and decided to redecorate my bedroom. I spent four hours shopping, which I really believe was some sort of miracle. I only had to lie down on a floor model bed very briefly. And I didn’t pass out at Walmart, which is also amazing, as I typically want to pass out in Walmarts even when I am in perfect health. I also helped carry my new nightstands up the stairs, which was quite a feat, considering I couldn’t even get myself up the stairs at this time last week. I set everything up on my own and felt like the most productive chemo patient in the universe.

The next day, I spent another several hours on my feet, throwing out loads of crap that had piled up in my home over the years. Old makeup, expired cold medicine, receipts. The types of things you just ignore for too long, making it progressively more difficult to tackle as time goes on. I went on a complete rampage, tossing things out and reorganizing. I don’t know where the motivation came from. I suppose having less clutter makes my brain feel less cluttered. And as you all know, I have a lot going on in my brain, so any mental space I can free up is a big help right now.

My new and improved bedroom after a bit of a facelift. That radiator was full of magazines and crap before. Crap be gone!
My new and improved bedroom after a bit of a facelift. That radiator was full of magazines and crap before. Crap be gone!

When I feel better like I do now, with only a few side effects present as opposed to several, it is hard to accept that I have to endure another round. I was hanging on by a thread a mere few days ago. Why would any rational person continually subject themselves to that kind of torture, when they know precisely what will happen?

I suppose, the answer, is that the alternative is worse. So, there’s that.

Friday is my last chemo. You’d think I would be excited, knowing it’s the end of this chapter, but I’m not. It’s not like I finish up the day and suddenly feel super. I still have to go through the suffering that comes after. I still have to drop all the way to the bottom once again and wonder how long I will stay there. I also am afraid to let myself get excited. To feel complacent. I am scared to let my guard down and believe that things really might start to look up. To get easier. What if it’s not really the end? What if I have an early recurrence? What if they throw me right back into chemo? What if, what if?

But for now, I’m not going to bother with that. For now, I’m not going to think about Friday and the week following it. For now, I’m feeling good. Almost like a normal human being. And in my peculiar case, that is certainly something to celebrate.

Enjoying my new bed, which I’m currently not stuck in. Hip hip hooray!

Looking in the mirror

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

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!

Looking forward

RIP eyelashes, you are sorely missed.
RIP eyelashes, you are sorely missed.

I looked at the results earlier this week from my routine blood draw, and for the first time, it showed a red flag instead of a check mark. The change alarmed me, as I stared at the ominous graphic of a down-facing arrow, signifying a drop of some sort. The description stated that I am anemic. As someone who has never failed a test, I was disheartened to see I had failed this one, after having a perfect score thus far throughout my chemo treatments. It was also an odd feeling, realizing that I am not in control of what is happening to my body right now. And things are most definitely happening. I suppose this should be reassuring, but there’s also something upsetting about it. I found the staff oncologist and asked her if the drop in my levels was anything to be concerned over. She explained that my numbers were still fine, and to be expected, for someone undergoing chemotherapy. The regular range only applies to regular people.

I am growing tired of the whole chemo routine and having all these bizarre things happen to my body.  I have about half an eyebrow on both sides and a significant portion of my once lusciously long eyelashes have fallen out. I was reading today that for many women, it takes a very long time for their lashes to come back, and often when they do, they are not as long as they once were. Something so silly, yet it made me feel quite sad. I have a few “things” and my lashes are (were) one of them. I often get compliments on them or people asking me if they’re real (they are….were). It can be rough to think of some of the long-term side effects from the chemotherapy, or the ones that will linger for some time. It is also somewhat of a heavy feeling, to think of the treatments and long road I still have to walk after chemo is complete. Despite what future post-chemo blood results might show, I know I will never quite be a “regular” person again. But let’s be honest, I never really was.

So in order to not get completely depressed, I’ve decided to make a list of some of the things I am looking forward to after chemo is over. Because there are things, and I need to remember them, especially when all that is going through my head right now is the fact that in a few days, I will once again be in a massive amount of pain and threatening to jump out windows.

Here is what I am looking forward to:

Eating sushi… the real kind
Not being afraid that every person who coughs or sneezes is going to kill me
Grocery shopping without passing out in the cereal aisle
Spring and the end of a miserable winter
Going for long walks
Not feeling like I am walking on hot coals
Hair regrowth, hopefully in the right places
Not having people stare at me with a does she have cancer or is she just some artsy girl wearing a scarf on her head look
Eating a real caesar salad
Having my skin return to normal and losing the not-so-sexy red patches that have taken up residence on my cheeks
Gaining my energy back (this one can take months, or years, but even a small increase will be something to celebrate)
Writing bitchy comments on people’s facebook statuses such as “I just endured four grueling months of chemo, but I do really sympathize with your seasonal cold that lasted three days.” (I will never actually have the nerve to do that, but I think about it all. the. time.)
Not having a perma-runny nose
Tastebuds that work properly
Not basing my entire life around my chemo schedule
Planning the most needed vacation ever in the history of vacations, even though I still can’t take one for some time
Being able to say I’m 28 years old and survived chemotherapy. And I’m still standing.

Living in the moment. For now.

Me, without a care in the world. Ah, to be young again...
Me, without a care in the world. Ah, to be young again…

For as long as I can remember, I have been an obsessive planner. I love to make plans, to organize, to prepare. And I’m quite good at it, too. Long-term goals, schedules. These are things I like. A fly-by-the-seat-of-your-pants girl, I am not.

With my cancer diagnosis, a lot of things came crashing down around me, and one of them was my ability to plan for the future. You might say that for everyone, cancer or no cancer, life is unpredictable and full of uncertainties. And you would be correct. None of us knows what the future holds, or what tomorrow holds, for that matter. However, in my case, things are a bit more unpredictable than they might be for the average 28 year-old. Or at least, I am more familiar with the fragility of life and forced to confront it in a way most young people do not have to.

Before, there were plans. Plans for family, houses, jobs, vacations. Regular things that regular people hope for and work toward and often take for granted. I was headed down a particular path, and things were going quite swimmingly. I had a very bright future, one which I took as a given. And why wouldn’t I? I was young, healthy, and had a lot going for me. I even remember thinking to myself, Life is going so well, I hope nothing bad happens. And then something bad happened. And I stopped making plans and thinking about the future, for the first time in my life. As someone who is not so great at the whole live-in-the-moment thing, I was suddenly thrust into that mode of thinking, without much choice.

People say things like when you have your own kids someday or when you’re retired someday and I nod and smile, allowing them to imagine such narratives, but I no longer let myself actually envision those scenarios anymore. I can’t. This doesn’t mean I don’t believe I have a future, or that I don’t wish to have many wonderful years ahead of me. It doesn’t mean I don’t have a positive attitude, or that I’ve given up. It means I have cancer. And it’s scary shit. And it’s unbelievably, excruciatingly difficult to acknowledge that there is the possibility that my plans for the future will be cut short. So for me, at this moment, it is just easier not to think about it at all. I can think about today and I can think about next week. I can plan for my treatments and organize my medical schedule for the next several months. That, I can do. But anything beyond that, I can’t plan for right now. I can’t see it. I hope that at some point, I will be a planner again. That I will allow myself to dream of all the things I used to and view them as real possibilities, within my grasp.

I don’t know what next year will hold for me. Or the year after that. I won’t be making any plans just yet.

But I will hope.

At least I haven’t lost my ability to do that.

Happy Valentine’s Day

Are you the person who sent me these sweet strawberries in the mail? You forgot to sign your name, but thank you, mystery person.

I thought I should post something because I’ve ignored several messages this week and don’t want everyone to think I’m dead, seeing as it’s Valentine’s Day and all. So I’m here to let you know I am still alive. I’m not sure if I should regale you with the thrilling details of my week. It was not a pretty one. I don’t think I would wish what I have been going through on my worst enemy. Well, maybe Hitler, if he were still hanging around. But everyone else, I think I would spare. (Sorry for talking about Hitler on Valentine’s Day. I believe that must be some sort of faux pas.)

The agony and pain I have felt since the weekend has been nothing short of nightmarish. I had read many horror stories about the drug I was given prior to my treatment, and knew of the possible effects, but I believed maybe I would be spared. I had to, or else I wouldn’t have let them hook me up to the poison so willingly. A lot of people believe that as long as you think positive thoughts, good things will happen, and you can get through anything. But sadly, here I am, the Valentine’s Grinch, to tell you that chemo doesn’t give a poop about warm, fuzzy, happy thoughts. It doesn’t care if you’ve had a horrendous six months of terrible crap thrown your way and really need a vacation. It will kick you on your ass until your jaw throbs, your muscles seize, your taste-buds disappear, your bones spasm, your heads spins and your nose bleeds.  It’s one sick, ugly bastard.

I threatened to give up again this week. I said I wouldn’t do anymore treatments. This makes me feel like I have an ounce of control over what is happening to me, even though I know I really do not. Right now, the idea of putting myself through this again in two weeks seems like something only a severely mentally unstable person would entertain. I can currently sit up and walk through my apartment without screaming and crying, which is a marked improvement over a day ago. The fact that I’m typing right now seems like some sort of miracle, actually. Hopefully this means I am on the mend and will have an almost complete recovery by the next round. Because I need enough days to go by that I can wipe this week from my memory in order to do it all over again. And if that doesn’t work, I need one of you to hit me over the head and knock me unconscious and hook me up to the drugs yourself. Just remember to wake me up when it’s over, or that kind of defeats the whole purpose.

So it’s Valentine’s Day. The day of love. Valentine’s Day itself makes me a tiny bit queasy, but a lot of it is about chocolate, so for that reason, I can get behind it. And I suppose it’s also about love, and I am happy to say that I experienced a lot of that this week. From my dad’s cookies, my mom’s back-rubs, my brother’s drug stash, my sister’s hugs. My poor family had to sit by and watch as I cried out in pain and threatened to jump out the window, which I imagine must have been quite upsetting. And of course, my #1 Valentine, my husband, who sits with me in bed at night while I cry and says It will all be over soon. This is love. This is what matters. Giving chocolates and roses and expensive things is very, very easy. But this kind of love is the hard kind. And it doesn’t come often. And if you are fortunate enough to have it, you should thank your lucky stars. I do. I am the luckiest unlucky girl in the world.

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.

Huffington, hairs, and hearts, oh my

Thanks for all the love from my last post. Sometimes before I click the “publish” button, I start to doubt myself and worry that I might come off sounding a bit too angry or a bit too sarcastic that day. And then, ultimately, a voice that says who gives a s— gets in my head, and I click the button and hope for the best. Turns out people tend to react quite positively when I am at my most blunt and honest. So I thank you for that, and consequently, I will try to not doubt myself in those moments where I am feeling particularly truthful.

Here is a summary of my past week, for those who are interested in that kind of thing.

  • Hung out with some nice lady friends where we talked non-cancer things and ate delicious pizza, the remainder of which I ate the next morning for breakfast (Judge me at your own risk.)
  • Blasted songs from The Lion King with my sister and then danced around to some P!nk song. Both bizarre choices, yet very therapeutic nonetheless
  • Had a nice visit with a friend from out of town and discovered we both have the same belief that cats are evil and trying to kill us
  • Watched Silver Linings Playbook. Two thumbs up
  • Got completely sucked into the American Idol auditions and all of the I’m an orphan with three children and I have cancer and lost my leg and my dog is blind and I’m deaf but I’m still singing anyway type of stories. I love it. I can’t help it
  • Started losing my eyebrow hairs and some lashes, although most are being stubborn and hanging in there for now, so I give them an A for effort
  • Realized showering when you’re bald is much easier than showering when you’re not bald. So that’s something
  • Got some back/spinal bone pain which is an unfortunate side effect of an injection I receive to give my white blood cells a boost. Nothing ventured, nothing gained
  • Had another heart echo test where I got to hear my heart beat very loudly, which I think had a pretty solid horror movie beat to it, if anyone needs me for any sound effects in the future
  • Was invited to publish my blogs on the Huffington Post, the first of which appeared a couple days ago, enabling thousands more people to suggest magical cures for my cancer
  • Had two doctor’s appointments which I had hoped would be helpful, but left me feeling more frustrated and stressed than I had been in a while
  • Got home after appointment #2 and sobbed and had a pity party of one and maybe punched a thing or two (No humans were harmed.)
  • Received this handmade card from a very kind person who doesn’t even know me. Turns out it was just the reminder I needed:

FAQs

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.

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.