Months ago, I was asked to speak at the National Women’s Show in April. It’s easy to say ‘Yes’ to something when it is months away. The day slowly crept up and before I knew it, it was this past weekend.

I shot my mouth off and invited my mom and aunt to come up for the weekend as I thought it would be a great opportunity to spend the weekend together. Actually, while I was growing up, my mom, my aunt and I would all drive to Montreal twice a year to see my other aunt for the weekend. When I was fifteen, my aunt from Montreal died from pancreatic cancer and so I thought having my mom and aunt come to watch me speak about cancer was somewhat symbolic. As the day got closer, I started to get nervous because I was not only asked to speak, but I was asked to speak for 20 minutes. The longest I had spoken at an event was about 15 minutes and although the time whizzes by, my fear is that no one wants to hear about cancer for 20 minutes.

Regardless, I cranked out a speech and included challenges, hurdles, sweet stories, and times when I laughed in cancer’s face. I went over it and over it on Saturday morning in preparation for Sunday afternoon’s 2:30 slot. I practiced on Keith too many times to count and after the trillionth time, he said ‘You’re treating this like an oral presentation. Treat it like you are just having a conversation.’ Don’t tell him I said this, but he was right. That’s exactly what was wrong. I was trying to memorize my own story. I started looking at my ‘speech’ less as a grade six school presentation and more like a chat with my girlfriends and I felt much more comfortable. Why didn’t I think of that?

My mom and aunt got into town at about 4:30 and we met them for dinner. We had a delightful Chinese meal and afterwards, I opened my fortune cookie and it read like this:

Dammit, I know. I get it. Move on! Quit dwelling on cancer. Enjoy life. You survived. Sometimes, I feel like life is begging me to move on and I just keep wanting to hold on because by moving on I am accepting that cancer was allowed to do this to me and I am admitting that I have accepted it. And by moving on, I fear that I won’t know who I am without cancer by my side. And if I move on, what is my excuse of being tired, and not having a breast?

That was a bit of an aside but it’ll tie in later, I promise. Anyway, Keith left us girls and we stayed up much too late chatting. I took one last attempt at practicing my speech then closed my eyes.

We headed to the women’s show at about 11am the next morning and as my mom and aunt went from booth to booth my stomach got tighter and tighter. I read that there were supposed to be 35 000 women go through this show this weekend and although I saw the stage that I was speaking on and saw that there was only room for about 35 women to sit while listening to me, I was freaking out a little bit. I have spoken in front of eight hundred people before, why was I nervous about this?

I started thinking about being perfect. I started thinking about being hilarious at the right times and getting the attention of the right person so that I could share my story at the next big event or write an article for a magazine or start a new career in public speaking (I think you get the drift and maybe a little of the delusion, too).

And then as I watched my mom and aunt booth-hop from the end of the aisles anxiously waiting for 2:30pm, I all of a sudden realized that this wasn’t about me. This wasn’t about how ‘well’ I did. This wasn’t about being funny, or witty, or clever or smart looking. This was about that one woman in the audience who felt alone until today or that one woman who felt a lump but she was told that she was too young to have breast cancer. Like a huge bag of hammers slamming over my head, it hit me that this wasn’t about me.

I had a sense of calm come over me and as I flicked my headset microphone from ‘off’ to ‘on’ I was completely ready to go on stage. So here we were, it was 2:30pm and it was time for the Professional Breast Cancer Ass-Kicker to go on stage.

As I was about a minute into my speech, a woman in her fifties came over, sat down and had a look on her face that said ‘Oh good, I didn’t miss this.’ Throughout the twenty minutes, she did a lot of nodding, some crying, some laughing, and a lot of tear wiping. When I was finished, I got off the stage and went over to my mom and aunt. The woman in the audience was speaking to one of the women who belonged to the group that I was speaking for. I could see that she had been crying and so I went over to her and put my hand on her back and asked if she was ok. She told me that she had been diagnosed when she was 20 and then again when she was 40 and she could relate to so much of what I said (she continued to wipe the tears). Then, what made it all worth it was her saying, ‘You know, I didn’t know why I came here today. I came by myself and wasn’t sure why I was here. Now I know. I came to hear you speak.’ Regardless of being out of treatment for years, she still had pain, and still had tears that hadn’t been cried yet. She got the contact information for the group that I was speaking for and is going to contact them for support. Why did I ever think that this was about me?

It’s women like this that make me get up in front of ten, a hundred, or eight hundred people and share my story. Once I realized that it wasn’t about me, I was able to help someone - the same way I was in India. I struggled for the first couple of days of my placement in Delhi because I didn’t know where to start, or how I would fit in or how the children would take to me but once I stopped making it about me and made it about the children, learning happened. This weekend, once I made my speech about someone else, I was able and prepared and that woman ended up getting what she needed from my speech.

I think that damn fortune cookie was right and I think as soon as I realized that it wasn’t about me, I was able to take another step towards closing my cancer chapter – not leaving cancer behind, but growing from my experience in order to help others and starting my next chapter. I think I am learning to use my story to help someone else rather than needing the help myself. Oh Lord, is this what they call an epiphany?

I know, I know, it has been weeks – months even. I don’t even know if I have a good excuse.

Well, I went to India, that’s gotta count for something. And, yes, it was amazing. I just keep thinking, ‘India exists’ and not just in textbooks anymore. I went with A Fresh Chapter along with 11 other survivors, Terri (the founder of A Fresh Chapter) and Hal, the world’s greatest digital story teller. I volunteered at a school that doesn’t have enough money for an actual school structure so we taught in a park. I have 1400 pictures to prove that I was there, friendships that will last a lifetime, and my heart was stolen about seven different times by different children whose different eyes told different stories.

About three weeks before I left for India, I asked Terri if it would be ok if I just told people that I went to India but didn’t actually go because I was scared, shitless. I was afraid for my safety. I was afraid of how the poverty was going to affect me. I was afraid that I was going to teach nothing to the children. I was afraid that I was going to be overwhelmed. And you know what happened? None of it.

I projected this sadness and depression on the people of Delhi before I even met them because I assumed that the importance that we put into ‘stuff’ here whether that means clothes, possessions, cars, money, accessories, etc. was what the people of India would be missing but instead I saw more smiles than I see here. I saw more pride in one person showing me her dirt floor home than I see here. I mean, I think it’s all safe to say that we all know that it’s what’s on the inside that counts, and that money can’t buy love/life/experience/personality/insertanythingelsethatyoucan’tbuywithmoneyhere but until you see someone surviving, nay, thriving on $200/month, until you see children sitting, LISTENING, and happy to be at school because to them it’s a privilege not a right, and until you see a woman smile back at you simply because you have taken the time to acknowledge her, it’s difficult to express what that’s like.

I have struggled with the question ‘How was your trip?’. Quite often, I just say ‘Oh, it was great.’ because I don’t know how to formulate my thoughts and experiences into words or into a concise explanation that isn’t going to make someone want to gouge their eyes out.

What I think I can put into words is the feeling of giving. I’ll try to explain. Since the day that I was diagnosed, I became the focus of a lot of people’s lives. Every time I walked into a room, people would stop talking and start asking about me, if I needed anything, about my latest doctor’s appointment and when I was going to grow my boob back. I got quite used to talking about myself and expecting the conversation to be about me (now, I’m not going to lie to you, before cancer I quite enjoyed attention and talking about myself, it’s just that cancer really lit up that spotlight).

Unintentionally, sometimes I think I would make the conversation about me because I just became used to it. And because of this, I lived in a cancer bubble, where it was all cancer, all the time. And, I think I have dreaded the day that someone forgets that I had cancer,that I struggled, that I survived because when that day happens, I will feel like my entire experience will be undermined. If I accept that it’s time to move on, I feel like I am contradicting that lesson that I have been trying to teach so many people – ‘Cancer doesn’t end when treatment does.’ I don’t feel any less associated with cancer now than when I was in the middle of treatment. The way I keep explaining it is through the loss of a loved one. I have explained many times how cancer is about loss and so when you compare it to the loss of a loved one, it’s not like once you bury someone, you get in your car, drive out of the cemetery and say ‘Geez, that was a hard week. I’m glad that’s over.’ It doesn’t work like that. And cancer doesn’t work like that either. I keep waiting to wake up one day without this cancer-monkey on my back but the little banana eating piece of shit won’t leave. Ok, sorry, that may have been a little angry. In saying all of this, something that I did experience in India that I have yet to experience here was that with the children at my placement, I didn’t have time to worry about me and worry if these children remembered that I didn’t have a breast, the focus wasn’t on me, it was on them and it felt wonderful.

Although this was a wonderful feeling, to take a little from what Terri and I have talked about since our return to Canada, I think my problem is that I expected India to not be A Fresh Chapter in my life, but instead be the entire book. I expected to fly to India for two weeks, volunteer, meet new people, and become an entirely enlightened, clear, sorted, healed person. I put the pressure of my post-cancer struggles and (if I can coin a term here for a minute that my cancer peeps may understand) my ‘stuckness’ on India and so when I came home and I wasn’t transformed (Changed? Yes. An entirely different person? No), I felt like I had failed at being a cancer survivor – regardless of how many times I tell other people that there is no right way to do this cancer thing.

This has led to a little soul searching and sometimes I wonder if I stay in my cancer bubble, in Cancerville (population me) because I don’t want anyone to forget that I had CANCER and the thought of not mentioning it within 20 minutes of meeting someone new makes me feel like I am lying to them because I have learned to identify with cancer, it is part of me, and I’m used to it, and I want to teach people about it (for example – the other day someone said to me [after finding out moments before that I had cancer] ‘Well, I’m glad you made it.’ Huh? I’m glad you made it? Isn’t that kind of comparable to ‘Hey, I’m glad you didn’t die’? Sometimes I am a little sensitive to these things but when I got home, Keith assured me that that wasn’t okay to say.).

I mean there’s also the obvious angle of ‘So, what you’re saying is, if you attempt to move on, you won’t be able to associate with cancer, and without cancer, who are you?’ Yes, I have thought of this. And in a weird way, I think the timing of my cancer has somewhat defined me. I had just graduated for the third time from university and I was trying to find myself, trying to start a career and make a name for myself. I found a job and after 15 months, I was diagnosed with cancer. By the time I went back to work, I was as much a professional cancer patient as I was a professional working girl. At that point, the majority of my career life had been spent in a hospital. So who am I without cancer? I don’t really know and to be honest, it frightens me a little to think about it.

How am I supposed to move on from cancer when the physical and emotional effects are at the forefront of my life?

The other day I was sitting in my office, crunching numbers and pushing paper – needless to say, my brain wasn’t all that engaged – and I started thinking ‘If I could be anyone, in the entire world, who would it be?’ I scrolled through a few beautiful actresses, rich people crossed my mind, people who have never had cancer came rushing in too but I kept coming back to the same person – me. Now, that is not a normal reaction to this question that I’ve been asking myself for as long as I can remember.

I’ve spent many years wanting to be anyone skinny (I’m still kinda partial to this one), I spent years wanting to be someone rich, someone famous, someone who has traveled the world, someone who wasn’t afraid of needles and a variety of other people who had traits that I admired or characteristics that I envied. It was only the other day that I realized that I wanted to be me.

I have said this before, but although getting cancer at 26 wasn’t exactly what I would call ideal, I have learned life lessons in my twenties that I may not have learned until my sixties or maybe even ever. Don’t get me wrong, I don’t buy into that whole ‘Cancer is a gift’ garbage, I am just trying to turn a horrible situation into a manageable one.

I think Keith and I have done things that we wouldn’t have done otherwise, like our Christmas trip to NYC. I think we would have put that off, until ‘next year’ and India – can you believe that I’m going to India? I fly out on the 14^th of February to Delhi along with 11 other cancer survivors to volunteer for two weeks. I am at a point in this cancer business (I just can’t write ‘journey’ anymore) where I am starting not to feel like a cancer patient anymore and I feel as though it’s time to look to the future rather than the past. I am hoping that this adventure helps answer the ‘now what’ post-cancer question. I would have never gone to India if I didn’t have cancer and didn’t have questions that needed answering. It is way out of my comfort zone and I have never been more excited about something.

I am also not trying to convince anyone (including myself) that my life is problem-free or perfect. My weight is at the forefront of my thoughts every day (who am I kidding, it’s every minute) and this one breast thing is really getting old. I don’t have much money and I owe a lot to the student-loan department of the government. I went to school for six years for three degrees in education and I am working in accounting. I still rent an apartment and aspire to own a home one day. I live four hours away from family and am missing out on our nieces and nephews milestones.

BUT

I am alive. I have surrounded myself with the kind of people that you only hear about in books. Keith and I spend the majority of our time laughing at cancer, at each other, and together. I have a roof over my head, food in my belly, and a pony tail. Although not having a breast does give me some anxiety and only feeds into my body image issues, I am starting to accept that it was part of the price that had to be paid to stay alive. I am slow moving on the reconstruction train but I am getting there.

I am surrounding by such generous, kind, and caring people. Your know, after coming to and supporting my benefit in 2011, friends and family dug deep into their pockets again and donated to Team Katie at the Relay for Life and then when I told people I was going to India as part of my survivorship business, they stepped up again to get me there. Saying ‘thank you’ seems like a slap in the face compared to how I feel. I am so grateful to so many people.

Some days I struggle, some days the bone pain from chemo that still ails me puts me into a recurrence tail spin and other days I can convince myself that it’s the chemo still working hard to fend off any potential cancer. I have the regular challenges that everyone has – too much to do – not enough time – need to organize – don’t eat this – gotta eat that – and so on – but I think I have just learned how to compartmentalize what’s important, what needs to be dealt with, and what can wait. I’ve learned to take a deep breath and work my way through life. I feel like I am living and not plowing through each year so I can get to the next like I used to. I can safely say that I am enjoying each day.

Keith and I have made a slight resolution. We have decided to do what makes us feel good in 2013. I am very hard on myself for just about everything and many times it results in guilt and struggle. I’m going to do my best to reassure myself that I am enough. As I have said, 2011 was awful, 2012 was great, and if this pattern continues, 2013 is going to be spectacular!

As time passed from my initial diagnosis, more and more people asked me the reason for my cancer. I think they wanted an answer so it gave them something to avoid and somehow provided them with more protection from the disease. They were hoping that I said ‘Uh, well, when I was a kid I swallowed some poisonous floor cleaner and it gathered in my breast and turned into a tumour’ so they could in turn say ‘Oh, thank God I never swallowed floor cleaner and therefore will never have cancer.’ People seemed to want to be able to put their blame somewhere, so they felt less threatened by the reality of cancer and it seemed harder and harder for people to grasp the concept that my cancer is a big question mark.

Never the less, I have been told by many, many people, who don’t have any medical or oncological training, that my cancer has a cause. Some people think it was the hormones from the birth control pill, other think it was stress, others think it was the food I eat or the deodorant I used, and others have blamed it on our environment. I continue to assure them that my entire medical team is baffled but regardless of genetic testing being negative, having no family history, and being only twenty six when I was diagnosed, they feel as though they know the answer.

In the beginning, I would let this kind of thing go, or just agree with the different conclusions to the cause of my cancer but I am starting to get annoyed – pissed even – because I think this blame game that we are playing is detrimental to our health. On Facebook yesterday I saw a picture of a bald woman, obviously hooked up to chemo, with IV bags lingering everywhere with a picture of a green fruit in the forefront and it said ‘The Soursop [it is some kind of fruit] – Totally ignored by the criminally murderous pharmaceutical industry, this medicinal tropical fruit kills cancer cells up to 10, 000 times more effectively than their expensive failure called chemotherapy with no side effects.’ Are you fucking serious? This just pisses me off. This picture blames me for losing my hair, for feeling like shit for 6 months, for not having a breast anymore, for taking a year off work, for everything that comes with cancer. It’s saying that I had a choice and when I had to choose my course of survival, I chose chemotherapy; a treatment that has horrible side effects and may have left me infertile instead of a simple fruit. What an idiot! The choice is so obvious, pick the fruit you moron, you like fruit, and it 10000 times better than chemo and the bonus? No side effects. Man, people are stupid who decide to go through chemo. (You see where I’m going with this?).

What pisses me off even more is that I know of women who have been fit their entire lives, who don’t smoke or drink and who eat organically and guess what – they got cancer. Is their cancer somehow not their fault but because I didn’t eat organically and am overweight, my cancer ismy fault? I was told by a doctor who specializes in nutrition and health that at 26 years old, it is physically impossible for me to be the reason for my cancer – I have not had enough time to be the cause because in 26 years, my body cannot produce a tumour because of something that I’ve done. Wow, did that feel good to hear. It doesn’t give me a free pass to live a reckless life but it does relieve some of the guilt that I have felt about somehow causing my own cancer due to stupid shit like this Facebook post(as someone who doesn’t smoke, drinks maybe 3 drinks a month, and has a relatively healthy diet).

This soursop fruit might be wonderfully healthy and it might have cancer killing agents but I absolutely detest when people who have never had cancer preach about how they would react if they were faced with it. I fully support alternative medicine and if anything, I am envious of those who are brave enough to refuse chemo because they believe in a more natural route but to say that chemo doesn’t work or that drinking green tea will cure the aggressive cancer tumour growing at a rapid pace in my breast is morally irresponsible and ill informed. And oddly enough, in all of the research that I did on breast cancer, treatment, chemo, fertility, etc. etc. etc. I found actual data and research about how chemo works and the survival rate and yet, I didn’t come across one thing that said ‘soursop is the cure.’

When I initially read this Facebook post (along with a variety of other ones that say marijuana will cure cancer, eating sugar is a sure way to get cancer, drinking green tea is a sure way to avoid it, etc.) I was pretty angry and it led to a tweet that resulted in a number of replies that I want to share with you (keep in mind that you only have 140 characters in a tweet so grammar doesn’t really count on Twitter).

My original tweet – ‘I hate reading about how people who have never had cancer would not do chemo and would instead eat a certain fruit or drink a special tea.’

Reponses

From @ChristinaNewman – ‘talking to hubby about this – I used to be that girl – refused treatment for 11 months till I realized I would die w/o treatment.’ I loved her honesty. You just don’t know how you would react unless you are faced with these decisions.

From @zapladybug ‘When I was first diagnosed *two* people told me green tea cures #breastcancer. Two. To my face. And they were sober.’ I loved this. It was retweet worthy. Seriously, who says that?

From @arielnoriega5 ‘Agreed! People think they would do one thing but when you are put in the situation, one thing is clear… treatment!! #Life’. Yep, couldn’t agree more.

From @terriwingham ‘Seriously. I think it’s total garbage as I sip my red wine Everything in moderation even moderation is my mantra ’. Terri, you’re so friggin’ great!

From @slieks ‘Even worse when they try to convince you it’s the key to your survival.’ Couldn’t have said it better myself.

From @lexieann73 ‘Agree! Unless they have been there and done that they should keep their mouth shut.’ I don’t pretend to know how I would treat MS if I was diagnosed and the same should be said for cancer.

From @iamnotcancer ‘After I finished chemo, an acquaintance told me a friend’s mother was cured by marijuana oil. Pot cures.’ Don’t forget your green tea!

From @nancebeth ‘I was told that grilled food caused my #breastcancer and that there was an herbal tea available that would cure it’. Aha! I knew there was a tea for that.

To my cancer peeps – thanks for listening, this post was brewing for months. To non-cancer peeps, please be very conscious of telling people why you think they have cancer and how to treat their cancer and don’t forget that sometimes bad cancer happens to good people, and instead of trying to get to the bottom of it, accept it – we have.

Today, I write with a heavy heart.

On the 28^thof December, I got an e-mail from someone at YACC (Young Adult Cancer Canada) and the subject said ‘Open when you have some time and privacy.’ I was in my office, at work, and for some reason, when I heard the ‘ding’ of my phone, I checked it. I didn’t really read the subject and instead just started reading the e-mail. It was an e-mail that informed us ‘YACCers’ that one of our own had died, on Christmas Day.

Back in May, Keith and I went out to Alberta for a YACC Retreat and I was lucky enough to meet Naomi. Naomi was one of about 25 other survivors, caregivers, and healthcare providers at the retreat. We all arrived as strangers and we all left as hugging friends and although it was mentioned (as a form of preparation) that sometimes we lose some of our friends to cancer, I just never really expected it to happen. Although Naomi and I didn’t stay in contact after the retreat, we were united by cancer and by the experience of the retreat.

Reading of her passing was difficult. I was grateful that my office door was closed as I shed a few tears at my desk. I have never asked myself why I got cancer, it really doesn’t matter, and to be honest, I have convinced myself that it’s so my mom, mother-in-law, sister, sister-in-laws, aunts, cousins, and nieces never have to go through it. I do however ask myself why I was spared. Why was I ‘cured’ while others are diagnosed with a more aggressive cancer or a cancer that is farther along? Naomi’s family and new husband don’t hurt any less than my family would, there is no less pain in the world because Naomi died from cancer and I didn’t.

This is the first time that I have experienced someone dying from the same thing that I had and I don’t know how to deal with it. I am having a hard time getting through this blog entry – I’ve wanted to write something for a few days now but I just haven’t found the right words or the strength. I so wanted to go to her wake and I selfishly didn’t because I was too scared. I was afraid that I would sob, loudly, the entire time. I didn’t want to take away from her, I didn’t want anyone consoling me when it wasn’t about me, it was about her. On the 31^st, via facebook, it was ‘Wear something Sparkly for Naomi Day’ and I participated; I felt like I was doing something in an otherwise helpless situation.

I feel as though cancer is that one thing you hope your doctor doesn’t say. It’s what we are all afraid of happening. For some reason, cancer didn’t seem as scary to me once I finished treatment as it did before my diagnosis because I knew that I could survive it. I mean the thought of having it again is horrifying but for some reason, it doesn’t scare me in the same way that it once did, that is, up until I found out about Naomi. It’s like her death has really brought everything to the surface again, it makes cancer real, the feelings new, and the pain as fresh as it was on March 11^th, 2011.

Up until I had cancer, when I heard about someone who had died, I thought about the family of the deceased and how they were coping and to be honest, I have thought about her family and her husband every day since I found out. But since cancer, when I hear of someone who has died, I have started thinking about what he or she thought about during his or her last day on earth. I think about the way I would be, and if I would be crying because I’d be scared to be alone, I think I’d be scared for what the after-life looks like, I’d think about what I hadn’t accomplished and how everyone would deal with my death. Does that make sense? I guess it’s because for the first time in my life, I could picture myself in a hospital bed, surrounded by family…

Although I put a lot of pressure on myself to be the ‘old Katie’ I know that deep down she is gone and along with ‘new Katie’ comes new challenges, new heartache, and new loss and although I would like to resign as a cancer survivor and just be me again, I am learning that alongside cancer comes continual struggle well after treatment is over.

I want to dedicate this entry to Naomi. You were a star on earth and now you are a star in the sky. Thank you for brightening my life.

Right before my last chemo, I remember thinking that cancer was almost over. I assumed that once the doctors, the hospitals, treatment and tests went away, cancer would go away too and but I learned that it doesn’t.

As time passed and the days of chemo were farther and farther away, my physical appearance started looking the way it did before but internally I felt broken. Now that’s not an easy thing for me to admit. I’m the one who others come to to fix their problems, I’m the one who can do anything, I’m a ‘yes’ person, and I not only don’t like admitting that I can’t do something, I strongly believe that there is nothing that I can’t do.

Cancer has left me with this void, an unfulfilled spot in my soul that needs to be filled. You ask, ‘what does it need to be filled with Katie?’ and I say ‘Let me try to explain.’ (<—– too much??).

Cancer can quite easily leave you with a sort of post traumatic stress disorder. During diagnosis and treatment, it is common to be in fight or flight mode and while everyone around you is struggling with what you’re going through, odds are you’re trying to make it through to the next hour without puking. Tomorrow, Saturday night, and next week all don’t matter – surviving the chemical warfare of chemo matters. It isn’t until the end of treatment when you have to deal with the emotional side because now that you aren’t trying to stop from puking or staying up all night with anxiety to only sleep through the day from exhaustion, you have time to think. While you’re in the thick of things, you almost don’t have time to deal with the psychological aspects of cancer and I think that’s why it feels so overwhelming after treatment (which is oddly enough when everyone around you takes a huge sigh of relief and starts treating you like it’s over).

Secondly, cancer is about loss. You have to mourn the loss of a body part, potentially. You need to mourn the life that you used to know. In my case, I have to mourn the body that I used to have. To be quite honest, I have to mourn naivety. I liked it a lot and I don’t have it anymore. You could compare that loss with the loss of a loved one; a parent, a child, or a sibling. I am not saying it’s an exact comparison, but the idea that I am trying to get across is that a year after a loved one dies, you aren’t ’over’ the trauma and the pain is still right there. As time passes, the pain may not be as fresh but it doesn’t mean it’s not there. That’s the way I feel about having had cancer. Sometimes I feel like my friends or family may think, ‘God, why is she STILL talking about cancer, treatment ended over a year ago’ but to be honest, the pain is still there. To be fair, once you’ve had cancer, your perspective changes and what’s important to you shifts so the idea of being the same Katie that I used to be doesn’t seem possible.

There is no right way to do this cancer thing and I mean that to include; your reaction to your diagnosis, surgery, treatment, survivorship and so much more. You have no idea if your thoughts are totally crazy or totally on par with what others think when they are at the same part as you are in your ‘journey’ (I still shutter when I write that word. I really don’t like it). I knew that the transition period between patient and survivor was difficult for most, but what I didn’t know was what I needed to help me through the other side of treatment.

A few months ago, I read a blog post by the amazing Terri Wingham. She talked about wanting to take twelve cancer survivors to India where they could volunteer for two weeks and by helping others they would be helping themselves. Now when I read this post, I thought I was just reading some of Terri’s wonderful writing but when I ended up in tears by the end of it, I knew that I needed to be part of the adventure.

Going to India, looking into the eyes of a woman who speaks a different language, comes from a different background, and was most likely not given the same opportunities that I have been given in life, will provide a connection and a unity that someone who has never had cancer cannot understand and although we won’t be able to communicate with words, we will understand each other’s pain. The thought of that makes me feel the healing power of this trip.

This trip means a lot to not only me but also to future cancer survivors. It is so easy to feel the most isolated and the most alone after treatment ends because for months you have been monitored on a daily basis and now it’s a simple ‘See you in three months’ and your body is totally left to betray you again. This foundation will help fill a huge void in resources for survivorship and a huge void in my post-cancer life.

I would really appreciate your help in getting to India. I am currently trying to fundraise $2400 to be able to go on this adventure. Any donation would be appreciated - if everyone who read this post donated $10, I would reach my goal in a heart beat. Donate Now

I realize that not everyone can afford to donate money and if that’s the case, please spread the word about this amazing opportunity to other cancer survivors. This is the beginning of an incredible adventure for future survivors and an essential part of surviving survivorship. Please pass on this link http://www.afreshchapter.com/delhi-2013/delhi2013-expected-outcomes

I know from having taught in grade school and ESL at my university that quite often the teacher becomes the student and quite often, I felt like I learned more than I taught. I anticipate that India will provide the same outcome. I hope to spread laughter and kindness and hope but quite honestly, I believe this is going to be a life changing experience where I will learn much more than I will be able to teach.

I have heard people call cancer ‘a gift’. I’m not even kidding, some people refer to cancer as a gift. I think of a gift as something that I would not only like to receive but also something that I would like to give to my family and friends and I can safely say that cancer therefore doesn’t qualify. The idea behind the concept is that once someone has had cancer, she develops a new perspective on life, she makes lifelong friends through the experience, she doesn’t take life for granted, she lives in the present and doesn’t worry about the future, et cetera, et cetera, et cetera. And, I will admit that cancer has been a great teacher and that I have learned life lessons in my twenties that I would have otherwise not learned until my fifties or sixties however I will never refer to cancer as a gift.

Most of the time, I am able to focus on what I have learned from cancer and live life accordingly but every now and again the thought of not making it to thirty because of a cancer sequel creeps into my mind. To be honest, the farther away treatment gets, the less and less I think about it coming back. Don’t get me wrong, it’s still a daily thought process but it isn’t an hourly one anymore and I’m hoping in another few years, it is more like a weekly thing instead of a daily thing. I try not to focus on it because it’s not like if I worry about it every day that I will be more prepared for the doctor to say it’s back. This is the best way I know how to describe it; once you’re diagnosed with cancer it is terrifying not knowing what is coming your way and how you will be affected by all of the poking, the prodding, the surgeries, the appointments, the mental game and everything in between. But, once you’ve had cancer, once chemotherapy isn’t just a word, it’s instead a past experience, being diagnosed for a second time means you know exactly what to expect and nothing terrifies me more. Recently, I saw an interview with Michael J. Fox and he said ‘If you imagine the worst case scenario and then it actually happens, you’ve just experienced it twice.’ Isn’t that the truth?

I don’t think survivorship is only about the fear of recurrence though either. I have some pretty hefty body image issues now. Seriously, I joke all the time about not having a breast because it’s how I deal with it but to be totally honest, it f*cking sucks. It makes my heart hurt to think that the only way that I could stay alive was to chop off my breast. And I know that many people say things like ‘Well, at least it was your breast and not your [insert other body part here]‘ but I miss her. I miss feeling like a woman or even feeling attractive. My breasts certainly didn’t define who I was as a woman but they certainly were part of my womanhood, the same way that being a mother is for other woman (oh wait, cancer may have taken that from me too).

When I pass a mirror anymore, I don’t look at my make-up or my hair (really, there’s no controlling it) but instead I make sure that my ‘boobs’ (and I use that word loosely) are straight and I make sure that there is no way to tell which one is real and which one is manufactured in the same factory as stuffed teddy bears and pillows. And my hair, well, I’ve just given up on it. I don’t look like Orphan Annie anymore but it is an interesting look. I try not to worry about it but to be honest I miss my hair. So many people would very easily say ‘There is so much more to worry about in the world’ and to be honest, I miss my breast more but I think we underestimate the trauma of losing our hair. At the time of treatment, it didn’t bother me and even being bald for so many months really didn’t phase me but it is now that I am trying to grow it back that I find the injustice of the hair loss of chemo (ugh, especially the thought of having to go through treatment again and losing it all over again).

I think cancer also presents this void in your life once you’ve finished treatment. I feel as though everyone around me took a huge sigh of relief when treatment was over and managed to translate the end of treatment as being the end of cancer whereas I seemed to look back at what I had just been through and think ‘Holy shit, I just had cancer. Now what?’ It was almost like it was just beginning for me while it was just ending for every one else. Although the physical warfare is intense, you know that the nausea will pass and the bone pain will lessen but the emotional stuff, it gets suppressed until after treatment. While you’re in the thick of things, it’s almost like you don’t have time, patience, or strength to deal with the emotions that come with a cancer diagnosis and it’s not until after treatment, once you stop living day by day (or minute by minute during the bad days), that you start dealing with your diagnosis.

As my physical strength started to return and my hair started to grow back, I stopped looking sick and I was able to go back to work and lead a normal life again except things weren’t normal anymore. I don’t know how to do anything that I used to do now that I’ve had cancer. I’ve used this analogy before but you know how new mothers often explain leaving the hospital with their first child with a lot of anxiety? I have often heard new moms explain it in a way that they are surprised that their medical staff is just going to let them leave with this newborn without a manual and without someone telling them what every coo, and goo goo means. I felt the same way after my mastectomy – ‘What do you mean you’re just going to let me leave? I don’t know how to get through a Tuesday with only one breast. And to be honest, I’ve never experienced any other day without a breast so you might as well add Wednesday, Thursday, Friday, Saturday, Sunday and Monday to that list. And while we’re at it, what’s the protocol for holidays?’ I somewhat still feel that way now. An example would be when I fly, I often think about my prosthesis (what if they pat me down?). Everything has changed but everyone wants me to be the same. Well, it’s not happening. Now, I know at this point all my cancer-sisters are nodding their heads and all my never-had-cancer-peeps are thinking, ‘Ok, she’s lost it! What the hell is she talking about?’ and I’ll try my best to explain it.

When I was first diagnosed, like within a week of being told the news, my mom and I were out at a housewares store and the sales rep was trying to tell us about the current promotions and all I kept thinking was ‘I have cancer. I have cancer. I have cancer.’ Intermittently, my thoughts were interrupted with ’50% when you buy the salt andpepper shaker’ and ‘Buy one get the second for free’ but primarily I was focused on cancer. I certainly don’t think like that anymore but I still do have a lot of thoughts go through my head that would have otherwise freed up the space to let me dream of my life without cancer. At the same time, although the ‘I have cancer. I have cancer.’ thought doesn’t go through my mind during every waking minute, sometimes I do feel like I am lying or omitting information when someone like a cashier asks ‘Would you like to donate a dollar to [insert cancer charity here]‘). In this weird way, I feel like I should tell her that I had cancer myself. I think it’s because even though you can’t tell by looking at me, I still feel like I am in the thick of things and I think in a way that I am; the cancer just moved from my breast to my mind. I still think about it, it’s just not in as much of an intense way; now when I think about not having a breast, it isn’t traumatic, it’s not as fresh and instead it’s just sad (and yet normal).

Tomorrow I have a doctor’s appointment. It’s just a consultation for my future reconstruction but I always fear the look of ‘Something’s not right’ on the doctor’s face. I don’t know if that fear will ever go away. I just had no concept that even in remission and even after being told that I am cancer free one day, that I will have cancer for my entire lifetime and without writing about it, others won’t understand it either.

Is it ok to say ‘Everything happens for a reason’ to someone who is facing a difficult situation? No, I don’t think so either and yet many people have said that to me about getting breast cancer at twenty six years old. For some reason, I don’t mind it as much when the person saying this five word phrase is a breast cancer survivor herself but regardless, I feel as though it’s fine for me to say this or think it but when someone else says it I want to snap back with ‘you have both of your breasts, don’t you?’ or ‘You’ve never experience the wrath of chemo, have you?’.

I could go on about what people say when you have cancer (actually, I have gone on about it, many times) but instead I want to share a story with you that has made me a believer of ‘Everything happens for a reason.’

About a year or two before I was diagnosed, I went to a nutritionist to discuss my weight. Within about 10 minutes of discussing my life, my weight and my lifestyle she had said that she thought that I had something called PCOS (Polycystic Ovarian Syndrome). In order to find out for sure, I needed to get off the pill for three months and get a blood test, neither of which sounded appealing so instead I just assumed she was right and looked into it further.

Two of the most common symptoms of PCOS are being overweight and rarely getting a period, both of which I had. While I was on the pill, I was getting my period of a regular basis but left to my own devices, I had maybe three or four periods a year. I came home after that appointment and did what any normal person does – googled the hell out of PCOS. I read that it was going to be very difficult to get pregnant because my absent periods had meant that I wasn’t ovulating. I stared at the computer screen and cried. The more I read, the more I cried. 

So what is PCOS, you ask? I took this right off of womenshealth.gov -
The ovaries, where a woman’s eggs are produced, have tiny fluid-filled sacs called follicles or cysts. As the egg grows, the follicle builds up fluid. When the egg matures, the follicle breaks open, the egg is released, and the egg travels through the fallopian tube to the uterus (womb) for fertilization. This is called ovulation. In women with PCOS, the ovary doesn’t make all of the hormones it needs for an egg to fully mature. The follicles may start to grow and build up fluid but ovulation does not occur. Instead, some follicles may remain as cysts. For these reasons, ovulation does not occur and the hormone progesterone is not made. Without progesterone, a woman’s menstrual cycle is irregular or absent. Plus, the ovaries make male hormones, which also prevent ovulation.

Anyway, I never ended up getting tested and just assumed that I had PCOS. I had prepared myself for a long road of pregnancy difficulties. What I wasn’t prepared for was the unexpected obstacle that chemo was about to produce, or so I thought.

Fast forward to March 16th – my mom and I are with the oncology surgeon hearing all about my treatment. I ask if chemo will affect my fertility and she throws out a statistic of 40% – I only have a 40% chance of being able to have a baby after chemo. I burst into tears and the rest is a blur. I seem to black out for the rest of the appointment as I was trying to envision my life without children. I ‘come to’ in the parking lot as I laugh my way to the car (when things get really bad, I laugh, not intentionally, I think it’s just my way of expressing pure frustration – some people cry, I seem to laugh) and saying ‘mother f*cker’ in too loud of a voice. My oncology surgeon referred me to a fertility doctor that I would see in April.

Keith and I head to the fertility doctor after my surgery but before chemo started. We discuss all of our options with the fertility doctor and I am sent for an internal ultrasound then sent to another doctor who reads the results.

Keith and I are sitting in Dr. C’s large office while he reads my imaging results and we hear him say the word ‘Excellent’. Keith and I look at each other and what I wanted to say was ‘Don’t eff with me here doc, I got enough on my plate. What could possibly be excellent in this situation’ but I instead sat on the edge of my seat waiting for him to explain himself.

He started with, ‘Well, you have something called PCOS.’ I filled him in on my prior assumption, he said ‘Well, it’s no longer an assumption, you have it.’ Okay, so?? He continued to explain that the average woman has 24 follicles on her ovaries and I had 60. It just so happens that it is the follicles that get damaged in chemo so even if fifty percent of my follicles get damaged, I will still have more than the average woman. Whoa, he was right, that is excellent!

He then said ‘I don’t mean to give you false hope but I really do think that you and Keith could have a healthy family after treatment without doing any preservation.’ Holy shit, excellent was an understatement.

Months later, I spoke to an oncology fertility doctor and I told her about my situation and she told me about ovarian drilling. In EXTREMELY simplified terms, ovarian drilling is a procedure where a doctor ‘damages’ your ovaries in order to encourage ovulation. The way it was explained to me was, they go in and damage some of the follicles (because the ‘poly’ part of PCOS means ‘many’ and in many cases it means ‘too many’). By damaging the follicles, ovulation is more likely to happen. She said essentially, chemo did what ovarian drilling would do for other women.

I kid you not, my periods came back about two months after chemo ended and I have gotten one every 28 days ever since – something that has never happened in my life prior to chemo. Needless to say, I am a bit of a believer in this whole ‘everything happens for a reason’ business.