Wednesday, April 2, 2014

Sweet Melissa

As many of you know, I was lucky enough to be chosen along with eleven other survivors to go to India last year. All twelve of us, starting out as strangers, went on this adventure not knowing what to expect or what we were going to encounter. I think it's safe to say that we made lifelong friendships on this trip.

This trip was one of perspective changing, of life choices, of commitments, of fulfilling opportunities, and of unbreakable bonds between all fourteen of us (twelve survivors, Terri [also a survivor] and the infamous Hal - videographer extraordinaire).

For two weeks, none of us felt like the 'cancer' girl/guy, we just felt like us. We didn't have to explain or justify our chemo fog, our missing body parts or our lives that were in shambles more times than not. We all got that part of each other's lives without having to explain it. There's an unspoken unity among cancer survivors where we understand the guilt that comes along with a diagnosis, the financial burden, the fertility issues, the stress that we put on our families and friends and the eternal fear that it is cancer, not old age, that is going to kill us.

While in India, we took a trip to Agra to see the Taj Mahal. We were paired with a roommate for the overnight stay and Terri (the reason we were all in India) put Melissa and I in a room together. Melissa was cool. She was one of those girls who when she spoke, you listened, because something wise was bound to leave her lips. When Terri told me that we were going to be in the same room, I felt like I had to step up my coolness to be on the same level as Melissa - not because Melissa demanded it, but because maybe we could be friends and maybe some of her wisdom would rub off on me.

She was only a year or two older than me. She understood what it was like to have cancer in your twenties. We bonded over that. We both understood what it was like to still relate to being a 'daughter' instead of a 'mother'. Neither of us had children and both of us relied on our parents - we discussed the impact that our cancer had on our parents. Although having cancer when you are younger isn't harder than when you're 50, 60 or 70, it comes with different challenges.

That night in our RajMahal hotel room (that's right, our hotel in Agra was called the RajMahal), was another confirmation that I was with someone who 'got it'. I didn't have to justify anything to Melissa, we were on the same page and our only prerequisite was cancer. And like Terri mentioned, while I was in treatment I had a hard time making it from my bed to the couch or the washroom but Melissa, she travelled across the world to volunteer. That says a lot for who she was.

The following week was spent volunteering and wishing that we could stay in India even longer. We returned from India and all went back to the lives we knew. Some of us went back to work, some went back to their families, and some, like Melissa, went back into treatment. The Delhi Dozen sent her cards and words of encouragement as we could all appreciate what she was going through from our own experiences with cancer.

Thanks to Facebook and Instagram, I was able to stay up to date with Melissa although we were a country apart. The tone of her most recent posts were not good. It was quite clear that things weren't improving and instead were worsening.

On Monday night, her mother posted on Facebook that Melissa passed away that evening. I can't even think of a word that fully expresses my emotions. How can this actually be her reality? How can someone not have done something? How are we still losing our friends and family to cancer?

My own mortality is then thrown in my face. There it is, reminding me not to get too comfortable in remission. Melissa died from something that was growing in my body not too long ago. And I am not free of the disease, I am in remission. It is this experience that amplifies my survivor's guilt. Why Melissa? Why not me? Why have I been spared thus far when so many around me continue to suffer through treatment or are given a stage 4 diagnosis? My fears seem trivial in comparison to what her family is going through right now and yet, I can't seem to make it an hour without crying, without thinking about her saying goodbye and accepting her reality.

I haven't posted anything on Facebook because I don't know what to say. Nothing seems appropriate. Nothing seems healing. Nothing fixes the fact that she is gone. I needed a little time to process. I needed the license to write a proper post about her. And even after finishing this post, nothing feels cathartic. This also doesn't fix the fact that she is gone. I am lost with this loss of another friend.

That night in Agra, the night before we visited the Taj Mahal, we discussed our dads, both of whom are musicians. She told me about her dad (and I have since seen the picture on her Facebook of the two of them with their matching tattoos). I told her about my dad too and I showed her the painting that I had got for my dad, it was of Ganesha playing the drums. My dad, the drummer, introduced me to so many different bands growing up. Some of his favourites include Tower of Power, Stevie Ray Vaughn, and the always-playing-in-our-kitchen, band-we-were-going-down-to-Georgia-to-see-on-my-dad's-hypothetical-motorcycle, The Allman Brothers. They have always had a special place in my heart and hearing their songs throws me back to the summers of the 1990s, when as a little girl, life was easy and naive; cancer free. I have always loved their song 'Melissa' not because of anything in particular, but it just always made everything feel right. It seems appropriate then that I can't help but listening to 'Melissa' on a loop as I write.

I recently sent Melissa a message offering to send her anything from some maple syrup to a beaver from Canada if it would brighten her day. I wanted her to know that regardless of none of us Delhi Dozen being able to stand right beside her, we were all united with her.

Regardless of her physically being gone, her spirit is alive and well in all of us. We are all better people for having her in our lives.

I am sending all the comfort and peace to her family. I can't even imagine that pain.

Hold your loved ones tightly tonight.

Rest well Sweet Melissa.

Thursday, November 21, 2013

Challenge Accepted!

For as long as I can remember, I have always put a lot of pressure on myself to be the 'est': tallest, funniest, smartest, youngest, well, you see where I am going with this. By the time I was in grade 4, I was four feet, eleven inches - needless to say, tallest was not difficult through my formative years. In my double cohort graduating high school class, I was voted funniest female and I was not afraid to put that on my resume for the few years that followed (funniest? Check!). By the time I was 24 years old, I had earned three degrees - well, at least three pieces of paper say I'm smart(est). And by the time I was 26, I was diagnosed with breast cancer, something that not many other 26 year olds can achieve (Youngest? Also Check!).

While I spent the first 26 years of my life putting pressure on myself to achieve all the important 'ests', I was not prepared for the pressure that I was about to feel as a cancer survivor. I'm not sure how many times someone has asked me the reason that I was diagnosed with cancer; microwaves? deodorant? the birth control pill? too much meat? not enough meat? too much stress? did you swallow a bottle of cleaner as a kid? did every female ancestor in your family have breast cancer before you? the gene mutation? tap water? And with this barrage of questions comes a certain pressure that no one intentionally puts on me but it weighs heavily none the less. Along with these questions come a deeper questioning; 'Now that you've had cancer, you don't still use a microwave, do you?', 'You're not going to eat that chocolate bar, are you? You know what sugar can do to you, especially now that you've had cancer, don't you?', 'What? You don't eat organic EVERYTHING? You are a failure at being a cancer survivor!'.

I consume so much of my day with questions of 'What would a good cancer survivor do?'

We are faced with so many questions about what to eat, what not to eat, supplements to take, pills to avoid, and interactions to consider that it becomes so overwhelming and the result many times is a guilt induced binge-fest on everything that we know is bad for us. I gained a whopping 33 lbs with cancer and chemo. Wait, aren't you supposed to lose weight when you're going through chemo? Ya, that's what I thought too. But with breast cancer, it's different. When they start playing with your hormones, when you eat anything that you can keep down regardless of nutritional or caloric value and when you limit your physical activity because the thought of walking to the bathroom exhausts you, you pack on the weight. Oh, and because I am in a medically induced menopause, the cancer drugs that I'm on now help pack on the weight, too. Yes, if you're wondering, I AM living the 20-something dream!

Many times, when I would obsess over eating the right thing or avoiding the wrong thing, I would feel so overwhelmed and helpless that I would find myself wondering 'What's the point?' and I would eat myself into oblivion. Anytime I would start to research post-cancer foods or cancer survivor diets, I would find opposing viewpoints; coffee is bad because of the caffeine/coffee is good because of the antioxidants; bananas are good because of the potassium/bananas are bad because of the potassium. Avoid sugar. Avoid fat. Eat enough fat. Avoid carbs. Our body needs carbs. Become a vegan! You need meat... Holy crap, it is so overwhelming. Actually, just out of curiosity, I just googled 'too much broccoli' and articles actually popped up. Seriously?

When our life has just been flipped upside down, we have been hammered with toxic chemicals, we are beaten and battered, we are many pounds heavier than we were, and we have no energy with no promise of any in the near future, where do we go? Where do we start?

Back in January, I started to realize my addiction to pop (soda for my American friends). I loved pop, a lot. It was that 'thing' that I could never give up. Take away chocolate, and candy, and pizza but don't ever take away my pop. In all the research that I had been doing, with all the different food, and all the opposing viewpoints, I couldn't find one article that said that pop was a good thing or that its contents were beneficial in anyway. At that point, I decided to try to make it a week without a pop; a little 7-day challenge if you will. I didn't think I would last three days but one day turned into two which turned into four which turned into a week and ten months later, I haven't had a drop of pop. I mean, I still dream about it, and most mornings I wake up hoping that it was just a nightmare, but to this day, I haven't had any since I gave it up. This gave me a little momentum and I started trying this little challenge with other aspects of my life.

I started upping my veggie intake. I like vegetables, luckily, but I have never been a big vegetable eater (well post-mom's cooking). I decided to try to eat 4-6 servings a day - I challenged myself - and it worked and now I just naturally gravitate towards the vegetables, I even crave them. Don't get me wrong, I still like all the bad stuff but I make sure to get my vegetables in to me and then if there's room, I go for the bad stuff and to be honest, there isn't usually room. I also tried eating less processed foods. I am no pro at this but I definitely limit what I consume when it comes to prepackaged meals in a can/frozen/vacuumed-packed container.

Two weeks ago, I got on a juicing kick and decided to do a three day juicing detox. I know, right? Why would anyone not eat for three full days and only consume homemade juice that isn't the most delicious tasting liquid in the world? Well, I thought after going through chemotherapy and still currently being on cancer drugs that it was a good idea to detox, to give my digestive tract a break from the ups and downs of chemo and cancer (a long overdue break). Day 1 was so hard and if it hadn't been for Keith, I think I would have quit. Day 2 was just as hard but at least I knew that I could say 'tomorrow is the last day' and Day 3 was easiest although we did spend a lot of that evening planning the food we were going to eat the next day. Actually, we had planned to order pizza because we were both craving salt and couldn't imagine anything saltier. And then, when the time came, oddly enough, we both just wanted salad. I know that sounds like I am making it up, or that I am getting paid by a juicing company to say that, but honestly, we both just wanted nutrients. It was like our body had rebooted and once we could eat again, once we could have the salt, and the sugar and the garbage, we didn't even want it. To be honest, I wasn't expecting that. Bonus!

But, this challenge approach has not all been about what I consume, it has also been about exercise. I rely on public transit and I walk a lot but I am not someone who exercises for the sole purpose of exercising. I also found that after I felt a little relief from the residual chemo fatigue, Tamoxifen was right there to pick up where chemo left off - I am still tired from cancer. Needless to say, I haven't had the most energy in the past two and a half years. But regardless, I decided that on October 1st I was going to join a gym and go for five days a week for the whole month. I could quit on November 1st if I wanted to but I had to make it through the month and I had to go five days a week. When I go to the gym (I have been a member at a few gyms over the years) I am not someone who likes to ease into it. Every day that I have gone, I've burn 800-1000 calories (an hour on the elliptical and then weights). The first week was the hardest. I was so warm for hours after my workout because my circulation was going crazy and then I would freeze for another few hours. I was sore all the time. I was so tired. I didn't think I could last the week let alone the month. I just kept telling myself that I want to enjoy things like baseball again (which I haven't played since cancer), and I am getting married at some point in the future, and I know about the correlations between being overweight and the recurrence of breast cancer, and an hour on the elliptical gives me time to think about the good stuff - the endorphins just encourage good thoughts. Well, wouldn't you know it, I'm still going to the gym 52 days later, five days a week and I am down 17.5lbs. At the 15.5lbs mark, I had officially lost the last of my chemo/cancer weight. Did that ever feel good! F-U cancer, and the horse you rode in on.

I am going in next Tuesday (the 3rd) for the last of my three surgeries. I am getting my expanders exchanged for implants. So that means six weeks of no elliptical or weights. I am nervous about the break in my routine but let's be honest, no pop is much harder than being on the elliptical for five hours a week and I'm ten months deep with the 'no pop thing' so I should be able to get back to it mid-January.

I know what it's like to feel like you need to make a change but feel powerless. Consider giving yourself a seven day challenge. Start with something achievable (which is different than easy). Giving up pop was achievable but it was not easy. Eating more vegetables was achievable but not always easy. As a cancer survivor, it is so easy to feel the pressures of needing to change your entire life over night but instead of trying change everything and succeed at nothing, try changing one thing at a time; you'll be surprised how long seven days can last.

Thursday, August 22, 2013

A Natural Ambition

Having cancer in your twenties presents issues that you may otherwise not face if diagnosed in your fifties or sixties. Issues include; worrying about student loans, being isolated from your peers, the loss of your womanhood in your prime (in my case, part of it was surgically removed) and the ever-looming (in)fertility.

I had six rounds of chemo and Tamoxifen has put me in a medically induced menopause. Ah, menopause at 27, 28, and now as of last Wednesday, 29. Yep, sure am living the dream these days. I still get my period and (because they just don't have the research about young women on Tamoxifen) they aren't exactly sure if that is a good thing or not - I've been told two opposing viewpoints by two different oncologists. At the start of each period, I have a sense of relief because for another month, I have managed to avoid permanent menopause at 29 years old.

With social media, I am bombarded with pictures of babies. When I see friends who post pictures of their 'positive pee stick' (yes people do that), or their growing bellies or their newborns, 1 year olds or the first day of school pictures, I feel lost.

Not one part of me is angry with friends or frustrated with them, shit if I had a baby, I'd be plastering those pictures on Facebook, Twitter, Tumbler, can you post pictures on LinkedIn?,;you get my drift. But, it seems that if my double mastectomied chest wasn't reminder enough that I may never have children, Facebook and Instagram are right there to reinforce it.
Although I know that being pregnant would not be the safest thing right now, I think about it all the time. In an alternate universe where I didn't have cancer, I would be pregnant with my second baby and in love with my first. But we don't live in an alternate universe and here's my reality; last month, after I was about four weeks post-op, I missed my period. That is my first missed period since chemo ended. On about day three of being late, the thought crossed my mind that I may be pregnant. I have an IUD in place but weirder things have happened. I'm not going to lie to you, day three to five was a bit of a mind-fuck (excuse the language but I have devoted a solid three minutes to coming up with a less abrasive, equally descriptive word to describe my feelings and I couldn't). I kept thinking 'I can't be pregnant, I'm on Tamoxifen, I have an IUD, I only have a 40% chance, there's no way' and the other part of me was cheering, 'I could be PREGNANT.'

On day six, I took a pregnancy test and although I knew better, I had hope (for some twisted, delusional reason). I stared at that test waiting for the second line to appear to signify pregnancy and although the test said results would appear in 90 seconds, I gave that second line at least seven minutes to appear. The second line never showed up but on day seven, my period did. It was late (I'm assuming from the anesthesia and myriad of prescription drugs that I was on after my second mastectomy only weeks before). I know that I can't get pregnant right now (not 'can't' like it's impossible but 'can't' like I'm still in treatment [Tamoxifen]) but that second line would have meant that pregnancy was possible.

I know women who have had babies after chemo, I have even met said babies. I know this isn't impossible and although I am not one for statistics, I had a less than 1% chance of getting breast cancer at 26 so a 40% chance of getting pregnant seems pretty high with my track record. So many friends are enjoying the happiness of parenthood while I'm waiting for my next surgery; being the one who has loved kids since I was six years old and being surrounded by so many people who seem to get pregnant by what seems to be just laughing too hard is heartbreaking.

So in true Katie fashion, in heartbreaking times, I like to torture myself with music that really drives the point home. You know when you hear a song and it’s like it was written for you? Look at these lyrics:
It felt like a given, something a woman’s born to do
A natural ambition to see a reflection of me and you
I'd feel so guilty, if that was a gift I couldn’t give
Could you be happy if life wasn’t how we pictured it?
And sometimes I just want to wait it out to prove everybody wrong
And I need your help to move on ‘cause you know it’s so hard, so hard.

Yep, lyrically, that about sums it up!

The thing about cancer is that it affects so many lives, regardless of whose body it’s harbouring. Keith has had so many choices made for him without ever being asked (and without ever complaining) but how do I not feel guilty for making him wait, for not knowing if I can give him the gift of life?

A few months ago, Keith and I were lying in bed and I asked him if he could picture his life without kids. The conversation went like this:
Katie ‘If I can’t give you children, will you still be happy?’
In true Keith fashion he said ‘It’s not a matter of you giving me children, we can either have children or we can’t.'

Keith and I have stuck with the idea that ‘if it’s meant to be then it’s meant to be'. I will be done Tamoxifen when I'm 32 and although that is not old when it comes to reproduction, chemo accelerates the aging of your ovaries and they could be 'as old as' 44 when I'm only 32.
On March 16th, 2011, my oncology surgeon told me that chemo would significantly lower my chances of having a baby so much that it was more likely that I wouldn't have children. I cried more that day than the five days prior when I found out I had aggressive stage two breast cancer.

I've talked with a few girlfriends about the way we used to see the world. When we were in high school we imagined graduating from university, getting a good job, marrying our prince charming, having a few kids and living the dream. Life was easy, dreams were attainable, the future was definite. Now, some of us have dealt with loss and pain and hurdles that have not only tripped us but have made it hard to get back up. I know that cancer has taught me lessons about life that many adults twice my age still haven't learned but I beg the greater powers at be not to teach me the lesson of being a childless woman.

And sometimes I just want to wait it out to prove everybody wrong
And I need your help to move on ‘cause you know it’s so hard, so hard.