Frequently asked questions: The next chapter

I think it’s time for another round of FAQ’s, don’t you? Here we go!

Your hair looks so good! Are you going to keep it short?

If I had a dollar for every person who has told me I should keep my hair this short… well, I wouldn’t be rich, but I could at least buy a nice sweater or something. I appreciate the compliments and everyone’s fascination with my hair growth process. However, I have no intention of keeping my current boy-cut. Having your hair fall out is totally traumatic. Having your hair grow back is totally awesome. I want it to keep growing. I have frequent dreams where my hair is suddenly long again. I look at old photos constantly and lament the loss of my long hair. So although this short “style” (if you can call it a style) is extremely low-maintenance, and perhaps one day I’ll go back to it… it’s still not me. It’s not my choice. And it still reminds me of cancer.

So everything’s good now, right? You feel good?

I never know how to answer this one. Yes, I feel pretty good, in comparison to how I felt when I couldn’t walk up a flight of stairs or raise my arms or sit up without assistance. It’s hard to complain about anything when I know what it really is to not feel well. But if you want to know the truth, I’m not just “fine” and “all better.” I still suffer from fatigue all the time. I often hit a wall in the late afternoon where I feel like I need to lie down and nap. I try not to plan more than one “exhausting activity” (such as grocery shopping) per day, because sometimes I can’t keep up. I have side effects from my drugs. Sporadic bone or joint pain. Headaches. Pelvic pain. Hot flashes. The constant drip of my nose. Tightness around my implant where I received radiation. Lots of little reminders, scattered here and there. So yes, I’m feeling pretty great, and thankful every day for my health. But it’s not perfect. And it probably won’t be for a long time.

You’re all done with treatment now, right?

Oh my gosh, you guys! Don’t you read this blog? I am totally NOT done with treatment. Every three weeks, I continue to check-in at chemo daycare and wait around 1-2 hours to begin my treatment. My port is then accessed with a needle and hooked up to an IV. It’s injected with saline, which leaves a gross taste in my mouth. Then I receive my medication for the next two hours. Then I go home and feel tired. I have been doing this for a year. And I am ALMOST done. In fact, Jan 31st should be my last trip into Chemoland, if you want to mark it in your calendars. That phase will be over, but I will still be taking my Tamoxifen each and every night and dealing with its thrilling and varied side effects (see above) for a looooong time. But it’s all a small price to pay for the chance to live, in my opinion.

Did you ever end up catching that mouse in your house?

No! The little guy is super sneaky and exceedingly intelligent. We have had a few sightings and have set up a variety of traps. Somehow, he is not falling for any of it. He knows what’s up. So for the time being, he is living with us. Really, he’s an ideal houseguest, as he mostly keeps to himself and stays out of sight and doesn’t ask for anything. But unfortunately, unlike with our other houseguests, our goal is still to murder him. Sorry, mouse. It’s a cruel world out there. As I have learned time and time again, sometimes life just ain’t fair.

Last week pre-treatment in the waiting room. The christmas tree was pink and adorned with cupcakes.
Last week pre-treatment in the waiting room. The christmas tree was pink and adorned with cupcakes and candy. Now that’s my kind of tree. Merry Christmas!

Stuff

Hi there! I don’t really know what this post is going to be about. Just stuff, I guess. So here’s some stuff:

If you’ve been following my Facebook page, you might know this first bit of news. I’ve started going out naked. Ok, no, not that kind of naked. But naked up top. On my head. I did it for the first time on Saturday. First to a street festival, then to see The Book of Mormon. I had initially told myself (during one of my many self-talks) that I wasn’t going to go out sans head cover for awhile still, until I really felt like I just looked like any other lady with short hair. But I’m an impatient person and I got tired of waiting.

At first, all I noticed was how cold the wind felt when it hit my head. Hair really accounts for a lot of one’s body warmth. After awhile, I kind of forgot about it, although it’s hard to ignore the stares that I get. My sister says they stare because they think I’m pretty, but I’m not sure I’m really sold on that. I think most people stare because they are trying to figure out what my “deal” is. And to be fair, I’d probably stare a bit too.

When I catch my reflection in a window or mirror, I can’t help but hear “Well, Sinead O’rebellion…” over and over in my head. If you have no idea what I’m talking about, you should probably watch more movies.


Sometimes, I look at other people and try to imagine what they’d look like with no hair. Or I see people with hair like mine, and I tell myself I look better than them. I realize that’s really terrible and I probably shouldn’t be admitting that out loud. But I do what I gotta do to cope. And if convincing myself that everyone else would look ugly bald is the ticket, then I’m going with it.

I’ve started taking photos to monitor my hair growth, because otherwise, I don’t believe it’s growing. Maybe these photos will help someone going through chemo, because I can’t tell you how many times I tried to find images of people’s post-chemo hair growth.

Today, bird's eye view.
Today, bird’s eye view.
Front view
Front view. I’m not really sure what colour my hair is at this point. Many people have grey hair post-chemo. I wouldn’t say mine is grey, but it’s definitely not the deep brown it once was. Kind of a mouse-y brown. But I imagine it is temporary.

You also might be interested to know that my body hair is returning in full-force. Just in time for summer, swimsuits, and short shorts. Yippee!

Today I had radiation #4. Only 21 more to go! Oy.

At this point, although it’s very early days, I still have no complaints besides some issues with mistakes in my schedule that hopefully will not keep happening, now that the staff know I am a force to be reckoned with. I’ve gotten pretty good at holding my breath with a tube in my mouth and a plug on my nose. Maybe after all of this, I can become a champion scuba diver. Does such a thing exist? I don’t know, but regardless, I don’t think that is my calling.

Today I also decided to pop into the lab to get my routine blood work done. My last couple tests had one level increase that prompted a new wave of panic in me, even though my doctors told me not to worry about it. But once I learned what this increase could possibly signify, it was hard for me to ignore it. So I was a bit hesitant to check my results this afternoon, but as mentioned previously, I am extremely impatient. So I held my breath and checked, and what do you know. Everything is back to normal. All green check marks. This is the first time I’ve seen everything be normal in awhile. And even though no one believed my previous results were anything to write home about, I still feel relieved. I like seeing those bright green check marks. Hello, I’m a straight A student. And patient. Anything less than a check mark is just insulting.

So, there you have it. Some stuff. More to come soon. You can count on it.

So what happens now?

It has been awhile since I’ve given everyone any type of real update, and since that was the initial point of this blog, I figure I should probably do that. You might be thinking, she’s done the scary part of chemo, we’ll never hear from her again! But don’t you fear, there is much more to share and the journey continues, one day at a time.

In terms of my surgery recovery, it has gone quite well. I always feel pretty satisfied when the doctors examine me and say that everything looks great, as if I had anything to do with it. I still suffer from body pains, mostly in my legs, which is assumed to be a residual effect from chemo. I worry that the pain will always be there. The price paid for living? Maybe.

I’ve been going for long walks, pushing through the aches, and I feel a bit stronger each day. I’ve also gotten pretty good at knowing my limits and being very blunt when I realize I need to go home and rest. After spending so much time alone, cooped up inside all winter, it can be a bit exhausting and overwhelming to be in social situations for long periods of time. That being said, I have loved spending some quality time with my friends the past couple weeks, catching up on their lives, and talking about non-cancery things. I have such good friends. I am lucky.

Hair update: There is not much to report on that front. I look like a newborn baby. Or a balding old man. Take your pick. There definitely has been some growth, but it’s very thin and sparse, and my scalp is still very much visible. I have read that the drug infusions I still receive can slow the hair growth process. As someone who used to cry because my hair was too thick, I now find myself using fancy volumizing shampoo that promises plump looking strands. The irony is not lost on me.

So, next steps. I have been hesitant to start really thinking or talking about the next phase of cancerland, because I really just want it to be over at this point. Now that I am feeling better and feel a bit of my “old self” creeping back in, I want to just ignore all the cancer stuff, erase it from my memory, pretend it never happened. I want to move on and get my life back. But my road is a long one, and it ain’t over till the fat lady sings. (Someone better hire a fat lady to sing to me when it’s actually over.)

In a few weeks, I will begin my radiation treatment. Many months ago, when I was writing about my frustration over having to make impossible decisions, this was one of them. To radiate, or not to radiate. That was the question. And I decided, since I’m having so much fun with this cancer stuff, why not throw that into the mix as well. Just kidding. The thought process was not nearly that simple, though I wish it was. The situation is incredibly complicated and I’m not going to describe all the particulars, for fear of unleashing the anxiety I am trying to squash surrounding the subject. The bottom line is, radiation is on the horizon.

Side effects may include the following: Skin burn. Blistering. Redness. Fatigue. Cosmetic defects. Superpowers.

These folks look so happy. Radiation must be a riot!
These folks look so happy. Radiation must be a riot!

This week, I will be undergoing my simulation where they will map out my treatment zone. This will involve getting several small, permanent tattoos on my chest. Never thought breast cancer would be the reason I would get a tattoo. But there you have it.

I also will soon be starting my hormone therapy, since my cancer is fueled by certain hormones. This will be in the form of a pill, which will be quite a nice change from the way I’ve become accustomed to receiving my drugs. There are all sorts of unpleasant side effects possible from this little pill. The list is long. The most common ones are: Hot flashes. Weight gain. Hair thinning. So I will be a fat, menopausal, bald man. It’s just all so glamorous, I can hardly stand it.

So, that’s essentially where I’m at. Mentally, I am in a bit of a strange place. I am feeling happy, and hopeful, and enjoying every second of my life, with a deep appreciation for every minute that I am allowed to feel good. Every step I can take, every hour that I’m not ill in bed, feels like some sort of small miracle. Yet it is during these happy moments that I am also filled with anxiety and fear. The fear of not knowing how long it will last, or what the future holds. Or what it doesn’t hold. The fear of my lifetime of happy moments being much shorter than everyone else’s lifetime of happy moments. I feel this need to hang on to every second. To pause time. To soak up everything and everyone, for fear it will all be taken away from me.

This is what it is to have had cancer. To have danced with death. To have lived through hell. This is what I’m stuck with now. The good, and the bad. So what do I do? I go on.

Life goes on.

Playing with my nephew. Happy moments.
Playing with my nephew. Happy moments.

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

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.

My new look

I never in my life thought I would type the following sentence and have it be true: Last night I shaved my head.

On Thursday, my hair started to shed. Slow at first, and then faster. I couldn’t resist pulling at it. Maybe I’m making it all up, and it’s not actually coming out. And then I would pull ever so lightly at a clump of hair, and it would easily slide off right into my hands, proving that yes, indeed, it was coming out, and fast. Yesterday after pulling out a decent chunk, I decided it was enough. Time to pull a Fantine and cut it all off. It was tempting to try to keep it as long as possible, especially since I have (had) so much hair. But I needed to get rid of it. To take control. To stop thinking about my hair falling out and start thinking about something else.

My little sister starting cutting and my husband commenced buzzing. I watched the entire thing in the mirror, which in retrospect, may have not been the best idea. Everything started off fine. I’m shaving my head, no big deal, people do this. We put on some upbeat music and made some jokes and laughed a bit. But then, as we got closer and I started to see the actual skin on my head, I lost it and entered full mental case meltdown territory. I don’t look like me. My hair is all over the floor. I am 28 years old. I have cancer. There is nothing OK about this situation.

After a brief but necessary pause and some major “you are not your hair” pep talk from my sister and a few deep breaths, we got on with it and powered through. No more tears. Just one more thing that needed to get done, so I got it done. A big check mark on the to-do list.

Don't mess with me bitches, I'm craaaaazy
Don’t mess with me bitches, I’m craaaaazy

Everyone said the hair loss would be rough, and they were right. Actually harder than I had thought. I am a pretty confident person and it is not really a vanity issue, although I would be lying if I said I don’t miss my long, beautiful hair. But that’s not the hardest part. What’s difficult is looking in the mirror or catching my reflection, and being reminded that I am sick. That this is real. Before, I could try my best to ignore it. But now, it’s out there for all the world to see. For me to see. No escaping or denying it. This is happening.

So what is there to do, but wait for the tiny pieces that are left to fall to the ground, and move on to the next challenge, after dealing with this one in my own way, on my own terms.

My sister said I look tough and like someone she would never want to mess with. Normally I would never be able to intimidate a soul, so the idea that I maybe could, is kind of cool. My small silver lining for the day.

And here I am today. No wig or scarf. Just me… minus a few hairs.

I may have cancer, but I saw Les Mis before you did

CHEEEEESE!

I snapped this photo last night as evidence that I am back to looking like an acceptable human being, and smiling once again. I did not post a photo last week because a) I couldn’t lift a camera and b) I looked like something you might scrape off your shoe. I have been to Hell and back, and will probably be taking the trip several more times, but am happy to report that as of this minute, I am feeling quite good. I do believe that my hair is starting to shed. My scalp is killing, and I am pulling out tiny hairs when I run my fingers through. That’s the thing with this cancer treatment business. Just as you are moving on from one unfortunate event, another one begins before there is much time to celebrate. But right now, I’m wearing actual clothes, I have some makeup on, I am eating lots, I have been out of the house, and I haven’t taken a single drug today. So I’m a pretty happy camper. Except for the hair thing. But beggars can’t be choosers.

Here are 10 key survival tips I have learned for getting through a very crappy time:

Ask for help. Last week I finally had to ask for help as I was not able to do much on my own. There are a few key people who completely saved my life and took care of me and I am so grateful to them.

Eat chicken soup and crackers when nothing else works. Although, as a warning, be prepared to forever associate chicken soup and crackers with bad times and bad feelings. I hope one day chicken soup reminds me again of holiday dinners rather than forcing myself to eat something while feeling ill.

Have a really good family and loving husband. Sorry, I realize you can’t really force those things, so it’s not a great tip. I just got pretty lucky in that area.

When your appetite comes back, ask my uncle to make food for you. I really attribute my small weight gain this week to large plates of mac ‘n cheese. The best.

Cry a lot. Life is poop sometimes. Can’t pretend it’s not. Sometimes a gal just needs a good sob. I probably could have filled a small kiddie pool with my tears last week.

Stop crying. Don’t be a baby. Eventually the tears must stop, mostly because you look like a snotty mess, and no one wants to look at that. Gross.

FaceTime/Skype with your parents. Laugh at them while they say weird old-people things and take many screengrabs while your mother makes crazy faces.

Watch the movie Pitch Perfect three times. I never would have thought this would be on the list, but I swear, that silly movie somehow brought me back to life. And yes, I watched it three times. Gotta stick with what works.

Listen to upbeat music and go for a walk. And dance while you’re walking like you’re in some kind of romantic comedy, and hope everyone else will be infected by your positive attitude and start dancing too. Except don’t be disappointed when that doesn’t happen and people just stare at you instead. Because truth is, most people are pretty lame and don’t dance in the street. Their loss.

Attend an advance screening of Les Miserables as your first outing in weeks. Ok again, I realize this wouldn’t be too easy to achieve. I mostly just want to make people jealous that I have seen this movie before the general public. There are not many reasons for anyone to be jealous of me right now. But this is one. So be jealous of me, please. I’ve earned it.

Hair, there, everywhere

Honeymoon hair, in all its natural glory. Sigh.

I have always had a love-hate relationship with my hair. As a child, before I learned of the brilliant invention that is the flat-iron, my hair was huge, frizzy, and unruly. I would break into a sweat while I attempted to blow-dry my thick, wavy hair into a sleek, straight mane, usually unsuccessfully, while developing cramping sensations in my arm.  I would ask hairdressers to thin it out as much as possible. I was always envious of girls who could just wash their hair and walk out the door, without looking like a bird’s nest had landed on top of their head.

Over time, I have come to appreciate my hair. With the right tools, I can wear it smooth and straight. I can also wear it wavy, or with more of a curl. I’ve learned that thick hair is, in fact, a good thing, and something many women desire. I receive compliments on my hair constantly, and somehow, it has become a huge part of my identity, and one of my favourite features.

And in a short time, I am going to lose it. It will thin, it will fall out, and then it will be gone. Be careful what you wish for.

A lot of people say that losing one’s hair is the most difficult part of the whole cancer ordeal. Because that’s when you finally start to look sick and when it all becomes very real. I don’t want it to become real. I want to run away and hide in a corner and wrap myself up in my precious hair and stay like that forever. But alas, in two days, I must go murder some cancer cells, so unfortunately I do not have that option.

I have been trying to prepare for the inevitable hair loss. I like to be prepared. I like to be in control. (Note: Control freaks and cancer do not play well together.) I cut off a great deal of my hair, in hopes that it would make the transition a bit easier. I’ve looked at some wigs and will eventually buy one, but am not thrilled about the prospect. Sure, it’s fun to try on different hairstyles and accessories. But ultimately, it’s a wig. Or a scarf. Or whatever. And I will be bald under it. And there’s not much fun about that.

Yesterday, on two occasions, I was told by strangers that I reminded them of Anne Hathaway. One woman said I should do a pixie cut style like Anne has been sporting as of late. I didn’t tell her that I likely would be forced to go that route eventually. Not because I have any choice. Not because I’m getting paid to star in an epic movie musical. But because I have cancer. And cancer doesn’t give, but it sure does take. It takes your plans. It takes your dreams. It takes your peace of mind. It takes your health. And it takes your hair. Your beautiful, flowing, thick hair.

Cancer sure is a greedy bitch.

But I will grin and bear it. I will make jokes. I will attempt to be the most badass bald girl you’ve ever seen. I will pretend like this was all part of my master plan, ever since I was a little girl and threatened to shave off my wild hair. Because when cancer kicks me, I will just kick it back. Harder. Right where it hurts.