An update

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

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throwback thursday

When you wake up one day
and big chunks of your hair are falling out
because you’ve had your first dose of chemotherapy
and your chest aches
and it is hard to move freely
because you’ve had your breasts removed
and you have ugly scars all over the place
and you know everything is about to get a lot worse
you can crawl into the corner and put a bag over your head and scream

or you can put on a really cheesy pop song
and dance really poorly
even though your plastic surgeon would probably not be too pleased

Sometimes, you just make a choice.

Why is this night different from all other nights

Tonight marks the first night of Passover, which is typically one of my favourite holidays. But right now, I am not in the festive mood. Unfortunately, the holiday decided to fall this year during my darkest of chemo days, so I do not get to celebrate. Thanks a bunch, lunar calendar. I am lying on a couch, alone, cursing the world, missing out on my family’s seder. I am not eating brisket or the many other delicious Jewish delicacies that soothe my soul. I would not even be able to taste the flavours if I tried. Instead of the happy, warm feelings I usually feel this time of year, I am filled with anger, sadness, loneliness. I am a Bitter Betty. Lately I feel as though holidays only exist as a painful reminder of what I am missing out on. What normal life was once like. I am watching life go by around me, and I want to jump in, but I can’t. And yes, I know one day, I will get back to living life and doing fun things and blah blah blah. I haven’t completely given up. But for today, I am having a big fat bad cancer day and I just want to wallow and feel sorry for myself. I want my damn brisket and I want to be able to taste it.

I want these so badly right now.
I want these so badly right now.

There was so much excitement over my last chemo round and ringing the bell and I thank all of you who rallied around me. It definitely makes everything easier, having nice friends like you. I wish I could be your happy cancer patient all the time. I wish I could be your shining beacon of positivity and let you know that you can make every day a great one if you just think happy thoughts, no matter how dire your situation. But the truth is, on days like this, when my drugs are making me completely looney and I can’t think straight and I haven’t slept more than a few hours in four days, positive thinking isn’t really going to get me anywhere.

I know for some people who are walking the cancer line, it is fundamental to their process to always keep on the sunny side. Always on the sunny side. And that is fine. Whatever gets you through. But for me, I have learned that sometimes I just need to be comfortable in my misery and sink into it. I don’t think this makes me weak, although all the images of super peppy cancer patients that saturate the media sometimes make me feel different. But I guess no one wants to see images of people crying all the time and looking like they’re a few inches away from death. Fair enough. If I were healthy and living my life, mostly oblivious of my own mortality, I wouldn’t want to think about those things either. But I don’t have that luxury. I have to stare at my reflection as I stumble past the mirror in my room in the middle of the night, and wonder who that shell of a person is and why she is standing in my place. No fuzzy, happy thoughts. Just reality. For the time being, at least.

Yesterday, I forced myself to go for a short walk with my husband, since the sun was actually out. I hid under my hood with my big sunglasses, as I often do these days. I started crying. I hate all these stupid bitches with their stupid hair. I actually said that out loud. I never in my life thought I would be so jealous of people, just for having hair. It’s not like it is their fault. You don’t have cancer, and I do. Bad luck for me, but no one’s fault. Yet still, it’s a challenge not to feel envious sometimes, of all you beautiful non-cancer types with your full heads of hair. Walking, laughing. Eating brisket. I want those things. I want them now.

I am pretty sure I will completely regret writing this post in a week when my chemo is wearing off and the steroids have left my system, but I do feel the need to document my worst days, for some reason. Maybe for the book I might write. Although I’m not sure if depressing cancer stuff is a hot topic for a bestsellers list. Maybe I just want to make other cancer folks who are reading this and having a crap day feel a bit less alone, or feel a bit less pressured to be something they are not. Or maybe when I do experience sweet moments again, I will want to look back at days and weeks like these, to make those moments that much sweeter and remind myself to savor every second. Like when I am one of those annoying bitches, walking around with my hair, without a care in the world. Oh what a day that will be.

Happy Passover to all.

Love, The Passover Grinch

Ringing the bell

I’m happy that I made so many of you happy with my last post. Tomorrow is chemo #6, so since I will probably start depressing the hell out of you by this time next week, I figured I would check in again while the going is mostly good.

I am currently chomping on some crackers to take with my pre-chemo dose of steroids. I will be on a lower dose this round, which hopefully will minimize some psychotic feelings and fat face and other issues, while still doing its job of mitigating serious reactions to the chemotherapy. I have learned that most of cancer treatment is trying to find a middle ground between making sure your treatment is doing its job and making sure you aren’t completely miserable and in constant agony. That sweet spot is a very difficult one to find, indeed.

I am still feeling pretty decent, all things considered. I have developed some uncomfortable muscle pain the past couple days, which I imagine is a delayed reaction to the cumulative chemo sessions. I also have constant runny eyes which can make it difficult to see, and a constant drippy nose, which can make it difficult not to be gross. Some side effects can show up after completing chemo (something fun to look forward to!) and last for quite awhile. It is difficult to deal with the toll all of this has taken on my body. A lot of people don’t realize the severe effects cancer treatment has on your physical well-being, long after the treatment is over. I worry sometimes about long-term muscle pain, joint pain, exhaustion, fogginess. I worry that people won’t understand and will expect me just to be like any other normal young gal. But I will never be normal. Nothing about this is normal. I guess I will just have to deal with it, same as I have been with everything else. And hope that I will find nice people to carry me up a flight of stairs when my legs start to ache as they do now.

So tomorrow is my final chemo. I made it through to the end of this grueling part of my aggressive treatment plan. At my hospital, when one finishes their chemo treatments, there is a bell you’re supposed to ring and people clap and whatnot. I’ve been a bit torn about ringing the bell. In three weeks, I will be right back in the chemo chair, because I need to continue to receive targeted antibody drugs for an entire year, due to my badass type of cancer. There are still side effects, but they should not be nearly as severe. I have already started on those drugs, but since they’re currently mixed in with my chemo cocktail, it’s difficult to know which side effect is a result of which drug. Hopefully, it will be a breeze compared to what I’ve been dealing with. But the fact that I will still be hooked up to bags of drugs every three weeks for a year makes me feel a bit reluctant to ring the bell.

However, after some deliberation, I have decided I am going to ring that goddamn bell. I have had to sit in that chair many times, with cytotoxic liquid dripping into my veins, hearing the bell ring and feeling envious of the person ringing it. That lucky bastard. So, now it’s my turn. I’ve earned it. And around this time next year, I will ring it again. Harder. In all likelihood, I will probably break it. Poor bell. You have no idea what’s coming your way.

Needing this pep talk to get me through tomorrow. Thanks, Coach Taylor. I can always count on you.

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!