What Being a Cancer Survivor Means to Me, 8 Years Later

8 years ago I was fighting for my life. Today, I'm still fighting. The impression that I had 8 years ago of what being a cancer survivor meant is not the reality I live today. I thought I would survive this awful illness and treatment, that I would be cured, that my life would go back to normal. Today, I think of the word "normal" as a delusion, an unattainable house on the other side of the picket fence. I actually can't even define what the word means to me anymore. I don't know what "normal" could be, but this is what my reality is.

I live with pain and fatigue. If you've ever been pregnant or on your worst period, imagine that fatigue. Then imagine that multiplied by, let's say, 3. Or maybe 5. That pain that you have? You feel it in every joint, tendon, muscle. Sometimes it's dull and nagging, if your pain meds kick in the way they should, and you'd qualify it a 5. Sometimes you can't get into any position that's comfortable or provides relief, and you just try to take sedatives to sleep through it. No matter when or how you move, it causes an audible cry or moan of painful transition. Relief becomes a necessary mental exercise.

I live with uncertainty and shitty odds. I know we all live with uncertainty, but my uncertainty stares at me in the face every morning I wake up, every night I go to sleep. When I hear my children laugh, I smile...and then I cry because I don't know how many more times I will get to hear them laugh, like if that amount is small enough to count on my fingers and toes. I think all the time that I probably won't see them get to grow up and become adults, and see what kind of adults they become. So I try so hard to focus on the gratitude now, that I am able to spend time with them and see them grow til whenever I can't see them grow anymore.

I live with a measuring stick in my brain: how my time line and all that I've gotten to experience measure up to those of my young friends who died from cancer: the kids they didn't get to have, the relationships they didn't get to experience, the dreams they didn't get to realize. Sometimes, and I know this sounds crazy and might offend some people, I smoke a cigarette in order to be able to breathe, to level the playing field in a sense, if you can imagine. It's like I'm sitting there, sucking in the carcinogens once in a while to feel less guilty for being alive, like life is a cosmic soccer match (I'm not athletically inclined, so you can substitute whatever sport metaphor suits you, okay?). 

So I sit there sucking down my Benson and Hedges menthol slim and sipping my homemade red wine, watching some sparrows jump around the dog house. And all of a sudden, all I hear is the door behind me open, and my four-year-old firecracker Moxie say, "Mama, can I draw a picture of you?" And that sound is music to my ears. Relief is immediate for once.

That's what being a cancer survivor means to me, 8 years later.

*written in honour and memory of my friends who have moved on

Wanted: More Moxie

Photo by Pia Massie

This year has been quite the Worrallwind (haha, I'm a cheeseball) ever since my book came out in November. Every new month that rolls around leaves me in shock that the previous month evaporated before I could take stock.

I'm writing this post from my hotel room at the University of Connecticut, where I'm giving a reading tonight. I'm grateful that I have written a book that people want to read and that more importantly, one that has some big messages and topics that get people thinking, like Agent Orange, mixed race, PTSD, young adults with cancer, or to put it simply, survival.

Being a young adult cancer survivor means a lot, and the month of thinking about what that means officially is now: Breast Cancer Awareness Month, or as some of us who are cynical about the Pink Ribbon corporate movement call it, Pinktober. But here's what it means to me, just another individual who has survived and keeps surviving: taking it one day at a time. Sure that's a big cliche, along with carpe diem (I just got a pair of socks that say "Carpe the fuck out of this diem"), and all that, but it's super true, especially when you realize that your expiration date is likely to be much shorter than that of most people your age.

I know--we don't really know when we will die. But statistically, my odds aren't great. I don't consider myself middle-aged. I consider myself at the end of my life. Hold on...don't get all argumentative and optimistic when I say that. I know that's your reaction. But look, it's true. So far, I've beaten the odds big time. But I also live with chronic fatigue and pain, and I'm not saying those two things like they are mosquito bites or little cuts or burns. I don't remember what life is like without pain, let me put it that way. And I don't think I will ever know that again. That's my reality. So yes, I do feel like I'm 80 years old, and I will probably feel like that even more so as time goes on. So I'm at the end of my life, and each day I get to live it is a gift. I can accept that. I have. My 40th birthday is coming up in a month, and I'm super stoked for that. But will I make it to 50? I will be surprised if I do.

My reality is that as a survivor of this particular type of breast cancer, I worry about metastases all the time. Currently, I'm doing a battery of scans and tests to see what's going on with my brain. Triple Negative Breast Cancer survivors have an increased risk of brain mets, and recent tests that I've done show that instead of the suspected epilepsy that I had as a kid making a return, there is something else causing dysfunction in my left temporal region. I know I shouldn't jump to conclusions and worry about it, but that's what I do. Luckily, my doctors are on it and have been doing EEGs, CT scans, and will do an MRI on my brain in a couple months.  In the meantime, I endure the headaches and the uncertainty. There's always the uncertainty.

Every single day I wake up and wonder how much I will be able to do. In the last two months, I can tell that my body is aging much faster than ever. Aches and pains of all kinds have become a baseline standard; pain level is about a 6 on the pain scale, and if it gets worse than that, I wait a little while to see if I have to make the trip to the hospital. But the fucked up annoying part is this: I have stuff to do. I have stuff I want to do. And when I can manage to get out of bed and do it, it's nothing short of a miracle to me.

On the outside I look healthy. No one knows how much I'm falling apart on the inside. I need wheelchair service when I travel, and I can feel the glares from people who see me in the wheelchair, and I can feel them judging me. Being disabled sucks. Being invisibly disabled adds another layer of suck to that.

I am super grateful that I am still here, that I have support, and that despite my pain and chronic, recurring issues, I can manage to do the things I love, even if it's at a much slower pace than I would like. But let me tell you, being aware of the breast cancer epidemic is not about pink ribbons. It's about thinking of the actual human beings who have to survive day to day, beyond the cancer, because of the cancer. Instead of giving into the pink ribbon campaign, research local organizations that help people with cancer (not just breast cancer). Support those. Because those of us who are surviving—that's where we get the most support. Not from Komen. Not from Revlon. But on a local, familial level. Surviving is about who is around you now, and how those people will help you reach the next day, if there is to be one.

So my wish for October is to have more moxie. Always. That's what survival is.

Update on My "Crappy Bones"

For a while now, when I take my supplements, my daughter comes over and asks, "Are you taking medicine for your crappy bones?" She's four, and yes, she's heard me refer to my bones as crappy enough times to qualify them always as Mom's crappy bones.

I got my bone density scan results (they scanned my hips and lower back), and the results are normal. That's awesome, but it doesn't explain to me why the bones in my leg and foot were noted as shockingly soft by the surgeon. So my general practitioner spoke with my former oncologist. Generally, bisphophontes are not part of regular practice at the BC Cancer Agency yet. They could argue that I need it for premature menopause, but since I'm on hormone replacement therapy (low dose), my bones should be protected.

The news doesn't relieve me, if I'm being honest. The whole shittiness around my type of cancer, Triple Negative Breast Cancer, is that it's still relatively new on the landscape of breast cancer, and studies are being done here and there, and a lot is unknown. So while another country might have research and data to back up a particular finding, another country (like Canada) might not accept that data as fully proven or some such and follow suit with treatment. This is why young adults like my friend Pat (http://www.youcaring.com/medical-fundraiser/help-pat-placzek-get-life-saving-cancer-treatment-/326039) has to do crowdfunding to get treatment to help him live--to go somewhere outside the country where there are experimental treatments that could help him.

When I was looking on the Triple Negative Breast Cancer forum, one survivor said that her oncologist has been giving her bisphophonates for years as a preventive measure against metastasis. But that's in the states. So this option is not available to me, according to Canada's findings and standards.

Here I am in a position that many patients often find themselves in: a medical mystery with no answers until some medical professional wants to do the extra legwork to find the answers or push to do something unorthodox. And in the meantime, I'm hoping that my doctors are right, that my fears are unfounded, that I won't get a bone metastasis even though from where I'm sitting (and have been sitting for two weeks), all signs point to a future in which I will meet cancer once again.

Dem Bones

Hi! It's been a long time since I've posted on this blog. I know that as time goes on, I feel like I move away from the cancer scene more and more--or at least, I would like to. When people see me, or they hear for the first time that I am a cancer survivor, they are surprised and comment on how healthy I look. They ask me how long I've been in remission (7 years and counting) and say how lucky I am to have "beaten" cancer. This is true. I am lucky. But what people don't realize that beating cancer entails having to endure life-long side effects, some of which are not anticipated or paid attention to much, especially when it comes to young adults. For example, even though I am in remission, I will deal with lymphedema, chronic fatigue and pain, and the hardening of radiated tissue for the rest of my life. But it's okay because I'm still here.

I had my 11th (?) surgery on Friday, May 22nd. Originally, I had gone to the orthopaedic surgeon to deal with my bunions, with which I was born. When I was a teenager, I had my right foot operated on, but the bunions (on both sides of my foot) grew back. Now that I'm older, the pain has been getting worse, especially since I also have arthritis. So a few months ago, I got to see a surgeon about my foot issues. Turns out, not only were the bunions a problem, but it seemed that my bones were shrinking, or that's how I understood it in my non-medical brain. The surgeon said that there was a gap between bones on the top of my foot, and that she would have to graft bone from below my knee and fuse it onto my foot to fix the gap. In addition, she'd have to insert a titanium rod into my calf to lengthen the tendon or something. Anyway, a fuck-tonne was going to be done to my left leg and foot (the right foot will be dealt with later, as the arthritis in it is bad and surgery would cause more chronic pain).

After my surgery, the surgeon told me that she was floored by how soft my bones are. She said that I have the bones of a 60 year old, that she wasn't expecting to see such deterioration. I asked her if my chemo had something to do with it, and she said maybe. But what was supposed to have taken 90 minutes for the operation took almost three and a half hours because the surgery was complicated by my soft bones.

When I saw my nurse practitioner, who also works at the cancer agency, a week later, and explained to her about the surgery and my bones, she was perplexed. She said that it's possible that the chemo could weaken the bones, but not to that degree. And I did just have my ovaries removed in December, but still, would my bones be that bad that fast? I take all the right amounts of calcium and vitamin D supplements and have been for years. I got a requisition to get a bone mass density screening done to see if I need to go on a bisphosphonate, a class of drugs for osteoporosis patients. And I'm not even 40 years old yet!

Coincidentally, as I left the doctor's office, I was checking Facebook and right there on my newsfeed was this article, posted by someone in the Triple Negative Breast Cancer Foundation group: http://www.sciencetimes.com/articles/6761/20150530/breast-cancer-stopped-tracks-new-technique.htm. This article basically describes how the particular breast cancer I had, Triple Negative Breast Cancer, causes holes to form in bones in order to produce a fertile ground for metastasis! And this is what floored me. For years during and after treatment, I'd been told that chemo could possibly thin my bones, that I would have to take extra calcium and Vitamin D to prevent the thinning. But this is the first time that I had heard that the cancer cells are actually forming holes in the bones to spread the cancer. I guess this is the problem with being "discharged" once you're in remission--there's little vigilance in what happens to you once the primary cancer is treated.

I'm lucky that I had this surgery. I'm lucky that I saw this article minutes after I talked to my doctor about my bones. I now have a plan to take bisphosphonates to try to slow down or stop this loss of bone mass and stop cancer's plan to make my bones its own nest for more cancer. And I'm lucky that I can tell other breast cancer patients and survivors my story--look into getting your bone density screened and talk to your oncologist or general practitioner about bisphosphonates, especially if you've had Triple Negative Breast Cancer. Hopefully there's still time to turn back the clock on these old bones.