Tomorrow evening marks the beginning of the Jewish New Year, also known as Rosh Hashanah. For those of you not in the know, this is one of the holiest and most significant days for us Jewish folk. It’s like our Christmas. Except not at all.
Unlike the North American type of New Year, the Jewish one is a touch more serious, with some heavy lessons thrown in for good measure (the Jews love lessons). The idea is that the Big Guy up there opens up his big book of judgment on Rosh Hashanah, and decides whether you’ve been naughty or nice and if you deserve to be written into his Book of Life. If you’re an evil, awful person, then your chances don’t look so good. If you’re a saint, then you likely have a good year ahead. If you’ve made a few mistakes, but are otherwise pretty alright, then you need to spend the next 10 days repenting for your sins and asking for forgiveness and making things right with the Big Guy, before he seals your fate for the year on Yom Kippur.
Okay, so I think that’s a really simplified version and if any religious Jews are reading this, I apologize, but that’s the best I can do right now. Judaism for Dummies.
Challah, i.e. the best part of any Jewish holiday. (photo by Tori Avey)
Last year, we celebrated the holiday the week I was diagnosed with breast cancer, so one might say that there was a bit of a cloud hanging over the holidays. Actually, there was a cloud hanging over pretty much every holiday for the entire past year, and some holidays I even had to bypass completely. So I am looking forward to any holiday where I can sit up, eat some food, enjoy friends and family, and not pass out in the middle of it all.
I don’t think I was really deserving of the past year, and if there is a God up there, I’m pretty sure he got it wrong when he decided what my fate would be for the following year. Unless I did some really, incredibly terrible thing that I have blocked from my memory, but I’m fairly certain that I’m mostly a decent person.
So hey God, if you’re listening, you kind of owe me one. I’ll look past your error this time, since we all make mistakes, and maybe you were just having an off day. It happens. But there is no need to waste time judging me this year. I’ve paid my dues. Please just throw my name straight into your Book of Life. Top of the list. Let’s try to make this year a little better, a little brighter, and a lot less cancer-filled. Thank you.
Yawn. I am tired. That could be the theme of the past year, really: I am tired. It turns out that getting back into the swing of things is exhausting. People had warned me it might be. My oncologist said, take it slow. But I was all, whatever, I feel great, I have more energy than all of these fools, yahoo! I may have overestimated myself a tad, while underestimating the cumulative effects of the crazy-ass things that have happened to me in a very short span of time. Oops. My mistake.
I am still working part-time, slowly increasing my days and hours each week. Working is strange. I think it would be strange for anyone, after an extended absence, especially because my role at work has changed, so it’s an even larger adjustment. But my absence was so intense and surreal, that I believe it might feel extra strange for me. It is like I was asleep for a year, stuck in some crazy nightmare, and then I woke up and immediately returned to my old life. Yet it is hard to remember that old life, or feel like it is truly mine. I don’t feel part of that world anymore, not yet at least. I feel more at home in the hospital than I do almost anywhere else. More familiarity with my doctors and nurses than with old colleagues.
I feel very much like an impostor.
Yesterday I saw my surgeon, the wonderful man who removed my butt-ugly tumor. He said to me, I bet you’re getting pretty close to forgetting all about us. But I don’t think I am. I don’t think I will ever forget. Maybe think about it all a bit less, sure. But forgetting – doubtful.
Sometimes I find myself having flashbacks, like a soldier with PTSD. I’ll remember how it felt to lose my hair. How I couldn’t move my arms after my surgery. How my ears rang and my heart sped and my bones throbbed while I lay under my blanket, wondering if death was on its way. Sometimes there are triggers. The smell of the bubbles for my bath now reminds me of pain, when I was forced to take baths to ease my sore muscles and joints. A piece of ice floating in my cup makes me gag, reminding me of the terrible feeling that would wash over me as the chemo dripped into my veins, while I sucked on ice chips to prevent mouth sores.
Just a couple days ago, I was hit with a vivid flashback of the day I was diagnosed, sitting in my doctor’s office, hearing “cancer” for the first time. You’d think I’d be used to it by now, but it still upsets me, still shocks me right down to my core. I had cancer? What? Who? Me? No way. Not possible. My breasts were removed? My hair fell out? WHAT?! Did that seriously all happen to me? There must have been some kind of mistake.
Imagine? Oops, sorry young lady, the cancer thing was all a big mix-up. Never happened. Snap your fingers and you can go back in time and forget the whole mess.
Time for some more tips! To read the first installment, click here.
Entertaining Yourself
If your cancer treatment drags on for awhile, as mine did, you will find you have a considerable amount of downtime. You will likely think to yourself, “Great, this will be the perfect time to read those huge novels I haven’t had time for and finally watch the entire box set of The Wire.” WRONG! So very wrong. Here’s the thing: your “downtime” during cancer treatment is not fun. It’s not relaxing. In my case, most of the time I felt like absolute crap. There is no way I could have focused on a book. Even reading a tabloid was challenging for me at times. And stimulating television or cinema? Don’t even think about it. When you are in pain and can barely lift your head up, you don’t want to watch anything thought-provoking, intelligent, or heavy. There is a reason that I watched two entire seasons of The Real Housewives franchise while I was doing chemo — the show is complete garbage and requires a very low level of mental acuity to follow.
Good chemo movieBad chemo movie
There were many films I thought I would watch while I was sick. Classics, documentaries, award-winners. WRONG AGAIN! I found the only DVD’s I wanted to watch were those I had seen a thousand times and provided comfort. Back to the Future, Edward Scissorhands, Big, Pretty Woman, Hook, every Disney movie ever. It didn’t matter if I passed out in the middle of the movie or just closed my eyes while I listened to the buzz of the TV. I didn’t need to focus and pay attention to what was going on. The purpose of TV and movies was 100% distraction. A way to pass the hours, in hopes that the days would go a little bit faster. A small respite from reality.
So in conclusion: Honey Boo Boo = Good. Six Feet Under = Bad (although it is my favourite show of all time, but it’s about the last thing I’d recommend you watch while doing chemotherapy). Dumb and Dumber = Good. Memento = Bad. Got it? Good.
Dealing with stupidity
If you have cancer, chances are, people are going to say some pretty dumb things to you.
People will ask you details about your prognosis, or say thing like “You’re going to be fine, right?” They will compare you to their 95 year-old great grandmother who had a small non-invasive cancer that was 100% different from the cancer you have. They will tell you stories of someone they knew who had cancer, that end with the person dying. They will make awkward comments about boob jobs, insinuating that a regular boob job is in any way similar to having your cancerous breast surgically removed. They will try to show you they know “exactly how you feel” by comparing your cancer to a very temporary, highly non-threatening malady they suffered from 5 years ago. They will say, “I know you are going to survive this” even though you are painfully aware that you might not survive this and that it has nothing to do with your positive attitude, or lack thereof.
I’m betting this lady has said some dumb things in her time.
Yes, people say some dumb things. This is because most people have no idea what to say or what to ask when someone has cancer. There is no guidebook. It’s understandable that people will say the wrong thing and mess up from time to time, as I’m sure I have many times in the past, pre-cancer. You have to give people a break. 99% of them have good intentions and have no idea that what they’ve said might be hurtful/anxiety-provoking/insensitive/ignorant.
Of course, if someone says something extremely stupid or blatantly offensive, you can always kick them, or take the high road and explain to them why what they’ve said has upset you. But all of that will get exhausting, fast. I just choose to smile and nod. That is usually the answer to dealing with most things: Smile and nod.
Using the Internet as a resource
Ooooh this is a tricky one. I love the internet. I love having information at my fingertips. But as anyone who has ever Googled a health issue knows, the world wide web can be a very dangerous place. So here is my advice to you: TREAD LIGHTLY. Seriously.
There are some great things you can get from the internet if you have been diagnosed with cancer. Friendly people on message boards sharing the tricks of the trade for dealing with treatment side effects. Reputablewebsites that can allow you to better understand your disease and your treatment options. (Note: there are also lots of bogus, scammy sites out there, so you will need a basic level of media literacy to navigate online resources. Your hospital should also be able to provide you with a long list of reputable websites.)
However, you need to be careful with how you use this information and how far down the rabbit hole you wish to go. Just a few evenings ago, I was reading some article, that led me to search for more information, and eventually I ended up stumbling on some studies that provided some very upsetting stats on survival rates for young women with breast cancer. As I read more and more, I became more anxious and riddled with fear. I burst into tears and sobbed to my husband, “I’m… gonna… dieeeeee… it’s… not… faaaaaairrrr waaaaah bleerghhhh.” Something along those lines. And I had been feeling fine just moments earlier. But a simple click of the mouse here, and another one there, and I had stumbled upon some really depressing information, that was not helpful to me in the least.
You’re going to find some info on the internet that you don’t like. I mean, hi, you have cancer. People die from cancer, and there are many things on the internet that wish to remind you of this fact, at every twist and turn you take. You must learn to shut out the noise. Remember that what you’re reading is some study of some group of people, and you are an individual. If the stats say that 99 out of 100 people died, that still means one lived, right? And that one person could be you, right? Definitely. At least, that’s what I tell myself. I also try to remember that even the best studies have their faults, and even the most thorough researchers cannot be 100% accurate all the time.
I could spend hours reading expert opinions and numbers that tell me the likelihood that I will or won’t be around five years from now. And sometimes I do, because I can’t help it. It’s like stumbling upon a horrific car accident and not being able to turn away. But you know what? You really should turn away. Keep on driving. Keep on moving. Because, for today, you are alive. You are not a statistic. And you really should be making better use of your time spent on the internet, like watching dumb clips on YouTube.
Today I saw multiple incidents where strangers were yelling at each other and saying nasty things in the street. A streetcar rider mad at an automobile driver. A biker mad at a pedestrian. Everyone just mad at the world, at everyone, and everything. And you know what? These days, mad people are what make me… well, mad. Sometimes I wish I could just touch someone and they’d get a quick glimpse into the hell that has been much of the past year for me and my husband. And then maybe they would think, oh geez, this really isn’t worth getting that angry over. If you have your health, and you have at least one person in your life who wants to be around you at least some of the time, then as far as I’m concerned, you have it pretty good. Can we all just stop hating each other and hating the world for one second? Seriously. Stop. Life is good.
Yesterday I participated in a video that will be shown during the first night of the Weekend to End Women’s Cancers walk. After we were finished, I was asked if I would be the speaker at the closing ceremonies of the Walk at the Rogers Centre, and represent all the survivors. I was really honoured and said yes, and asked if instead of reading from a script, I could write it myself. I don’t really think reading someone else’s words will sound anything like me, or necessarily be what I would want to say. So now I’ll have to think of what I want to say. I am not worried about writing it. I love writing speeches. The thing I was most excited for about having a wedding was getting to write a speech (besides the whole getting married thing, I liked that too). So I should be okay in that area. I am mostly worried about being a huge sweaty mess and having my eyebrows melt off my face. Or going completely blank and just saying, “Breast cancer sucks!!!” and having everyone throw tomatoes at my head.
I’m thinking of writing a book. Just thinking about it. I have a lot of people really pushing me to do it. So I guess I’m in the early planning stages. In other words, I have written nothing. Well, besides this entire blog, which I guess is something. But there is so much more to say, and such a longer story to tell. I just don’t think I have the emotional stamina to deal with it right now, since I’m trying hard to NOT think about cancer as much as I can. So I might leave it alone for a bit, and tackle it when I’m ready. I’ve already imagined it being turned into a screenplay, and I’ve thought about what I would say in my Oscar acceptance speech. I realize this is jumping ahead a bit and I should probably attempt to write a sentence or two before buying a fancy gown. But go big or go home, right? Right.
I went back to work this week on a part-time schedule. It was a bit overwhelming as I had to try to absorb a lot of new information in a short amount of time. But I think I’ll get the hang of it again after a bit more time. I refuse to allow myself to get stressed, or to let anyone else’s stress rub off on me. I can’t really afford to be stressed. And I kind of have this new life perspective now, where it isn’t too difficult for me to separate what is truly worth getting in a panic over vs. what is not. Pretty much almost everything falls into the latter category.
I’ve been buying some clothes lately, because it felt necessary after wearing pretty much nothing but pajamas and sweatpants for a year. I remember after I was first diagnosed, I couldn’t bring myself to shop and didn’t want to buy any clothing. It felt pointless, like maybe I wouldn’t live long enough to wear the clothes or maybe I’d never have a need for regular clothes again, or never like the way I looked in anything. I didn’t want to be dead, with a bunch of new clothes, and have to leave my family to deal with getting rid of all them. Clearly, my mind was in a pretty dark state. But it ain’t there anymore. I love clothes. I want more. MORE MORE MORE.
Today I went to a check-up at the hospital, where three different people looked at and squished my boobs. While I was sitting in the waiting room, I saw so many scared women, clearly only at the beginning of their “journey”. You can usually tell by who has long hair. I remember being that scared girl those first few months, sitting in the waiting room, wanting to cry in the corner and be pretty much anywhere else. And I’d look at other ladies with short hair, who clearly had just finished their treatment, and I was in awe of them, wondering if I’d ever make it to that point. And as I sat there today, with my almost-pixie hair, feeling confident and healthy, I realized I was at that point. I am now the girl that others are staring at, wondering if they’ll make it over to the other side. Wondering how I survived. Truthfully, I don’t know how I did. But somehow I made it. I am part of the short-hair club. I am someone others look to for hope and inspiration. If they only knew that I laugh when people fall down, or when someone farts, then maybe they wouldn’t feel so inspired. But that can be our secret.
I’m back from sunny, hot Jamaica, and I’d love to say I’m glad to be home, but that would be a bit of a lie. Spending a week where I was pampered and taken care of and did not have to worry about a single thing was quite luxurious. And honestly, I could have used another week. Or year.
This was the first week in nearly a year that I didn’t have to talk about cancer, or how I was feeling. No one there knew about the cancer. I was incognito, blending in with all the other happy sunburned people (sans sunburn, of course – hello, I’ve already had one kind of cancer, I’m no dummy). I got several compliments on my “beautiful hairstyle”, with no one assuming I had lost my hair, but rather that I had just been bold and cut it all off. One of the staff members, an aspiring model, even said it made her want to chop hers all off too. No one had a clue why I was there, or why my hair is so darn short, and I liked it that way. It truly was a break from reality and my life. No doctor’s appointments, no hospitals, no cancer.
I’m not sure if it was the Jamaican air, but my hair actually seemed to grow and change in the one week that I was away.
Of course, cancer wasn’t completely absent from my mind, because I am no where near at that point yet in my mental recovery. I still had some pains that made me wonder if my cancer has spread. And I still felt a smidge of sadness over the thought of my life being cut short, and missing out on moments like swimming in the ocean or watching a beautiful sunset. So many of my happy moments now seem to have this slight shadow of darkness attached to them, and I never realize it’s happening until it sneaks up on me. I hope eventually it doesn’t have to be that way, but I think it will take awhile still. Patience is something I must learn as I navigate this very confusing post-cancer existence.
Two very relaxed people. And of course, my port/scar prominently on display.I ate dessert after every meal and did not feel guilty one bit. This dessert featured five different types of chocolate.
Something I also noticed from this trip was that as much as I have changed from my illness, I am still fundamentally the same person. I had wondered if perhaps my life-long fear of flying might have disappeared, now that I have truly been through something extremely scary and feel I have a new perspective on fear and how to face it. But even as I told myself, You’ve been through cancer, a bit of turbulence can’t scare you, I still panicked with every bump and squeezed my husband’s hand until it turned red and wondered how any rational human being could ever think it’s a good idea to be trapped with a bunch of strangers in a tight space, forty thousand feet above the ground. My fear of flight has most definitely not been cured as a result of cancer. Alas, I am still me, same as always.
I got a massage on my birthday in an outdoor cabana, where I could hear the waves crashing and feel the breeze coming off the water. This is my idea of cancer recovery.
Cake in bed. A brilliant idea which I highly recommend.
For my birthday, on the last night of our trip, my husband bought a wishing lantern for me. You’re supposed to light the lantern with fire, make a wish, and send it out into the sky, over the water. I’ve seen them before and always thought they were so pretty and magical, as they faded into the night sky. This seemed like a perfect opportunity to make a wish. Whether it worked or not, I need all the help I can get, so there wasn’t much to lose. At the very least, I got to see something beautiful, and at the very most, my wish will come true. Not a bad deal, if you ask me.
Leaving the beautiful scenery and no-stress vibe of vacation land was very difficult. I began to feel like myself again for the first time in a long time. I even felt a bit pretty, instead of like an awkward looking boy. This week, it’s back to reality. Tomorrow I will be returning to work after a 10-month leave (which I initially thought would only be about one month. I think I underestimated what the year had in store for me. Oops). I will be on a part-time schedule at first and then build up more hours and days each week until I’m back full-time, so as to not shock my system and completely exhaust myself. I definitely have some mixed emotions about returning to work, but I am excited to get back to having a normal routine, and for the welcome distraction. I also have another treatment on Friday morning; unfortunately, not the massage kind, but the cancer kind. So the holiday has come to an end and it’s time to face the challenges of life once more. I am so grateful for the time I had away, to remember how beautiful the world is and how amazing it is to be alive to see it. I will dream of the next vacation, where instead of escaping from cancer life, I can just escape from regular life, like your average stressed-out, tired, burnt out human being, in need of a break. I can’t wait.
Greetings from Jamaica! The sun is shining, and I’ve eaten my weight in food, and I am so very happy to be here.
I assume that that sentence will be true by the time you are reading this post. I, in fact, am cheating a bit and am writing this post in advance of my trip and scheduling it to appear while I am gone.
If I have done this correctly (and it’s very possible I have not), today should be August 9th. This glorious date is also known as my birthday. The big 2-9. Happy birthday to me! (And a one-day belated happy birthday to my beautiful, smart, best sister in the whole wide world. I love you sissy!)
My birthday cake from my 21st. Thanks mom!
This birthday feels like a pretty significant one for me, as I say goodbye to twenty-eight. It was right after my birthday last year, at this time, that I found a lump in my breast and my entire world changed after that moment. Twenty-eight was a hard year; a year filled with many lessons, challenges, and triumphs. I’m sure for most people, twenty-eight is not necessarily a particularly significant year in their lives. Eventually all the years start to mush together, and become periods of time or life-stages, rather than an individual 365 days. But in my case, I am quite confident that I will never forget the 365 days of being a twenty-eight year-old.
I think many people who have had cancer would say that birthdays take on a new meaning after you have been diagnosed. They truly do become a celebration, and an accomplishment, rather than just another year. I have noticed that most people view getting older and aging as something to fear, and something they don’t want to face. It seems everyone makes comments and complains about how old they are getting, or how much they’re dreading turning 30/40/50/60, etc.
I am no longer part of this massive majority of humans who fear birthdays and wish for eternal youth. I dream of getting old. I dream of turning thirty. Occasionally, if I’m having an overly optimistic day, I may even dream of what it would be like to be forty. Forty, right now, sounds ancient to me. I wish I could be forty right now, and have 11 more years under my belt. And if I’m really fantasizing here, I wish I were ninety right now, with all the life experiences one is supposed to have had. Ninety, with cancer. Still not ideal, but I’d take it over twenty-eight, with cancer.
I think getting older is a gift. It’s a privilege, to make it through another year, and have your health. It’s not a given, and it’s not your right. With each birthday you are fortunate enough to celebrate, comes a certain amount of luck. I feel very lucky to get to have another birthday, and to be able to share it with the person I love most in the world, while sitting on a sunny beach. I’ve earned this day, and I’ve struggled to get here. And now that I’m here, getting older never looked so good.
Here’s to twenty-nine, and the dream of thirty.
If you’d like to give me a birthday gift, please help fund breast cancer research, which is the only gift I really want. Thank you!
During chemo, all I dreamed about was going on a tropical vacation. Somewhere quiet, with sand and a beach. I was filled with envy, while everyone seemed to be hopping on planes and jetting off somewhere, as I sat in a ball on my couch trying to find the physical strength just to get up and make it to the bathroom.
And now, it’s my turn. And you all have my permission to be jealous.
Last week, I attended shiva for Linda and had the honour of meeting some of her amazing family. It was so special to get a stronger sense of what Linda’s life was like, and the people she surrounded herself with. I felt so lucky to have had her come into my life, even though it was for much too short a time. I do believe that people enter our lives for a reason, and I feel that Linda left such a wonderful legacy behind, and taught me many lessons, for which I am very grateful. Her family told me of how much Linda had admired my attitude and my honesty, but I hope they know that the feeling was completely mutual, and I felt a true kindred spirit in Linda.
Of course, despite it truly being a celebration of her life, I still felt a deep sadness, as I’m sure most did. It is always so sad when someone dies much too early. This unshakable feeling of a life unfinished. Cut short. Sometimes I wonder if anyone ever feels ready to go, when it’s their “time”. Is it easier when you’re 90 vs. 30? Or does it always feel as if life just sped right by you, without there ever being enough time to do and see all that you planned.
Since getting diagnosed with cancer, I’ve thought to myself if I could live just until “middle age”, that would be enough and I’d be satisfied and grateful for the extra years I got. But I’m certain if I make it to that point (and I hope I do), that I won’t feel any more ready to go. That it won’t be any easier. When life is good, it is natural to get greedy and want more. More years, more experiences, more trips, more love, more laughter. More living.
I do feel more pressure to live my life to the fullest and make every day count and fulfill the requirements of countless cliches. I think it would be almost impossible not to feel this way, when you know your days could be limited and that a long life and old age is not a certainty, but more of an abstract concept. A hopeful wish. A perhaps, rather than a definitely.
The strange thing is, even with this pressure and this fear safely tucked in the back of my mind, I don’t really want to do anything different. I don’t want to jump out of a plane, or climb the tallest mountain or run away to an exotic part of the world and leave my life behind. If my life were a movie, I feel like that’s what my character would do.
But what I want most of all, what I dream of, is a normal, long life. Filled with the mundane, with splashes and sprinkles of excitement thrown in here and there for good measure. I want family, and traditions, and changing seasons. Lazy nights and long days. Eventually, wrinkles, and some grey hairs (or any hair, really).
When it comes down to it, I just want my life to go on. I don’t need anything to change, and I don’t want to be a poster girl for how cancer can miraculously change your life for the better. I just want to be able to feel that when my time is up, I’ll know I lived the life I was meant to. Nothing particularly extraordinary. Nothing filled with daring adventures and endless excitement. Just life. Boring, typical, beautiful life.
I have always been hesitant to offer any advice to those dealing with cancer, as everyone’s experience is so individual and unique. But I do feel as though I have gained a heavy load of cancer wisdom and it might be my duty to share this with others. I often turned to the internet and stories of cancer survivors to help me navigate my treatment and everything that came before and after. So I do feel it’s important to dispense what knowledge I might have, with the chance it could help someone.
The Canadian Cancer Society reports that about 2 in 5 Canadians will develop cancer in their lifetimes. That is an unsettling statistic, no doubt. And if you employ some basic logic, this means that you or someone close to you is likely to experience cancer at some point (sorry, I don’t make the rules). So here are some tips, in case you ever need them (and I hope you don’t):
Telling people you have cancer
This one is a toughie and one of the first real challenges you face after a cancer diagnosis. Suddenly it is not just about you, but it is about everyone else’s reactions to what you are going through. For me, it was important to have control over this aspect. I sent emails to my closest friends, so that they would hear it directly from me and there would be no false information. I also gave direct orders: Don’t freak out. Don’t ask me questions right now. Don’t call me because I’m not ready to talk about it. And they followed my instructions, each responding with their concern and love, but none asking questions or showing panic.
Telling people in person can be more difficult, as you have to watch their immediate reactions, and a role reversal immediately takes place, where you feel as though you need to console them and tell them everything will be okay. This can be a bit uncomfortable, which is why I tried avoiding telling people in person as much as possible. I hated watching people’s jaws drop. I hated all the questions that naturally followed. I hated seeing their fear that I would die written all across their face.
This is how people react when you tell them you have cancer.
This was one of the reasons I chose to start a blog and be public about my cancer. To know that it was out there and that it wouldn’t come as a shock to every person I happened to bump into on the street. In this sense, the blog has been a tremendous help to me. It has given me a sense of control over who knows about me and what they know.
So really, it is up to you how you choose to inform people about a cancer diagnosis. If you want to keep it to yourself, or you want to send out an email blast, or you want to ask a family member to do it for you. It’s about you and what you need, in that moment. It’s not about other people and how they might feel. This will be your first lesson in how to be a selfish cancer patient. But don’t worry, you’ll find you’ll get pretty good at it.
Attending doctor’s appointments
I am a pretty organized person, which often makes me wonder how the average patient deals with so many appointments and keeps track of so much information. When I first started with my cancer meetings, it was extremely overwhelming and felt endless. There were many specialists to meet and a ton of info was given in a condensed amount of time.
It is important to have some sort of system. For me, my iPad has been my savior and I love it dearly. (It has also become a running joke with my oncologist, who makes fun of its cracked and abused condition every time I see him, after I accidentally smashed it while waiting for my chemo one day.) Before each appointment, I organize all my questions via note-taking software, which I can easily access from the web, my iPad, or my desktop. I constantly add to my notes as thoughts pop up between appointments. When you are in an actual appointment, your time is short and your thoughts get muddled. This is why it is good to come prepared.
During my appointments, I go through all my questions. I also record the audio of these meetings, which is way easier than trying to frantically scribble every little thing your doctor says to you, which we attempted to do in those early appointments. These audio recordings have been lifesavers to me. They’ve helped me go back and listen very carefully to the opinions and advice of my healthcare team, which often helps me get a better grasp on my particular situation and the decisions I need to make. They also help me to face the awkward things I say and bad jokes I make while meeting with doctors.
Quick tip: Be careful not to delete the recording before it saves. I have done this. Do not recommend.
Dealing with unsolicited advice
Anyone who has had cancer has likely dealt with someone telling them what they should be doing to fight their disease. Many of these people have good intentions, and sincerely believe they are actually providing you with helpful information. Many may not realize that how you choose to treat (or not treat) your cancer is completely between you and your healthcare team. Maybe your partner, or your parents. Otherwise, no one else’s opinion really matters. But unfortunately, you will still get it. Again, and again. And again.
I think many people do not realize that offering unsolicited advice can actually cause more stress than good. It can make you wonder if you are following the right plan, or question your faith in your doctors and medicine. It can fill you with doubt and cause anxiety, as you wonder if it’s true that eating a cookie is going to make your cancer spread, or that modern medicine is just some big evil scam and you should just eat a pound of broccoli and you’ll be just fine.
For me, I had to learn to shut out the noise. To understand that although people had good intentions, their beliefs were not my own. To put my trust into my extremely accomplished and brilliant physicians, and to believe research and hard numbers, not speculation. Ultimately, you know what is best for you. No one else does. And I think this applies to many facets of life, not just to those with cancer.
Sometimes, we all just need to shut up, and let people do as they wish.
There hasn’t been too much to report lately. I feel as though I am in a strange state of limbo. But not the fun kind of limbo, like these people are experiencing:
The fun limbo. Although not really that fun if you’re terribly uncoordinated like I am.
Rather, I am in a sort of cancer limbo. Somewhere in between being sick and being healthy. In between the chaos and instability of the past year, and what I hope to be the more calm and predictable pace of the next phase. I feel as though I am just waiting. Waiting to be approved to return to work. Waiting to have my 3-month check-up with my oncologist. Waiting for my hair to grow back. Waiting for all the plans I have to become a reality. Waiting for my life to resume.
And of course, waiting to see if the treatment worked, and to know that I didn’t go through hell for nothing. Unfortunately, I’ll be stuck in limbo waiting for that particular answer for quite awhile. So I guess I need to adapt and adjust accordingly. Which, luckily, I’ve gotten pretty good at.
I am also waiting to see if these terrible hot flashes will subside. I got about a two week break between chemo-induced hot flashes and hormone-induced hot flashes. Turns out, they are pretty similar. I even take a mild anti-depressant to try to combat them, but it seems to be failing me. Just another pill to pop.
I’m sure there are many menopausal ladies out there that can relate to the horrific discomfort that is the HOT FLASH. I wake up multiple times throughout the night, feeling like my face is on fire, with my body covered in sweat. Then I lie awake, remember oh, right, I had cancer. This sucks. And I wait for it to pass until I can finally go back under the blanket, and wait for the next one to hit.
This isn’t an uncommon thing for a woman to experience. I get that. But I am not supposed to be experiencing this for another 25 years. I try to flip my thinking and remind myself, I’m doing this to prevent a recurrence of cancer. I’m doing this to increase the odds I won’t die. And when I think of it that way, it doesn’t seem so bad. A small price to pay, really. But when I feel as though I’m on fire, I’m not thinking about the benefits of cancer treatment. I’m thinking about how shitty it is to have cancer in the first place. How frustrated I feel that I will be dealing with side effects for a long, long time.
Last week, I went to a Justin Timberlake/Jay-Z concert in a big stadium. I don’t typically go to shows like this. I prefer more intimate performances, and less of a spectacle. But I thought it would be a fun time, and it really was. It was good for me and my husband to be out, on a weeknight, doing the kind of thing your average young couple in the city might do.
There was a moment when I looked around at the other people in the crowd who surrounded me. My peers. People my age. Girls with their long hair, and their breasts sitting right where they should be. And I thought to myself, I have been through so much more than any of you. You all have no idea.
When the concert began, I felt my emotions take hold and my eyes even got a bit misty. It still feels surreal, to be out, in public, enjoying myself. I have experienced so much misery in such a condensed period of time, that the happy moments catch me off guard. Those moments where I feel like my life has returned, like it was all a bad dream.
And then, I was hit with a hot flash. My face felt as though it would melt right off onto the dirty floor, and flow through the aisles, mixed with all the spilled beers that had been kicked by overzealous concertgoers. I thought I might pass out and topple over my chair, while everyone around me continued to dance and sing along, oblivious to my scorching body temperature. I remembered the cancer. And that I’m not like those other people. And that I’m not back to my normal life. Not just yet.
And so, I wait.
My friend drew this for me when I was doing chemo. It is super hostile and I love it.
pass me another cupcake 