Breast Cancer at 26 years old isn’t exactly what Katie Evans had planned. She decided that although she didn’t have a choice in having cancer, she did have a choice in her attitude and wasn’t about to let cancer take that away from her.
Today, she writes about her life as a ‘professional breast cancer ass-kicker’ with her blog ‘LovelyKatieLumps’
In this interview, Katie talks about her journey and the lessons breast cancer has taught her.
Meet Katie Evans
Antonia: You were diagnosed with stage 2 breast cancer at 26 years old. What was your reaction?
Katie: My very, very first thing that I said was ‘Holy shit, I wasn’t expecting that’ but what I was thinking was ‘They have the wrong file, yeah, that’s it, I can’t have breast cancer at 26, I’m not old enough. They have the wrong file!’ After about the first ten seconds of blurred vision and assuming that the words that had been read to me (‘It’s not good’) by my doctor were that of someone else’s file, other thoughts consumed me. You always hear about people who say that their lives flashed before their eyes –
for me, everything that I hadn’t accomplished came rushing to the forefront.
I wasn’t married, not a mother and didn’t have the career I wanted. I wasn’t ready to say goodbye to the people I loved. I didn’t sob, although one tear did drop. The rest if the day was spent swearing, telling my immediate family and consulting with Dr. Google.
Antonia: Up until your diagnosis, you had a plan for the future; you were studying for a career, planned to get married and have children. Something that we all do, we are going for something in life, and all of a sudden, something happens that changes everything, something we have no control over. Things that open you to whole new reality that teach you things that otherwise you would have not known about. For you it was cancer. Some people call this a gift. What was it for you and what has it taught you?
Katie: Well, I despise when people call cancer a gift. A gift is something that I would consider giving to a friend of mine and I wouldn’t give cancer to my worst enemy.
Lessons Cancer has taught me
I am very grateful however for some of the lessons that cancer has taught me; lessons that I may not have learned until my fifties, sixties or seventies or maybe ever. My perspective has changed.
In my twenties, it has been made quite clear to me that planning my week or my career or my life in any capacity doesn’t translate into success or financial stability
or 2.3 kids or the picket fence, instead it means being totally unprepared for when life throws you a curve ball. Very quickly, I learned that ‘We Make Plans and God Laughs’ (the title of my very first blog post). Now, I’d be lying if I said that I still don’t plan and control and organize like a crazy person but I am fully aware, more than many of my peers that while having a plan A, plan B, C, D, E, and F are just as likely to happen.
I think cancer has also taught me a great deal of patience. For example, when someone cuts me off on the highway followed by the flipping of the middle finger or when a cashier is rude to me, I often wonder what has gone wrong in his or her life. Was he just told that he had cancer this morning? Was she trying to plan her upcoming chemo schedule while maintaining a household of three children? I haven’t given everyone around me a free pass to walk all over me but before I snap back and before I judge, I try to think about my first week post-diagnosis and I consider the anger, guilt, pain and mindlessness that I experienced and I try to give others a break, too.
Finally, cancer has taught me to be present. Before cancer, I was headed down a road of stress and developing a bad case of workaholism – and with my diagnosis a light switch went off inside of me that made me realize that when I’m on my deathbed, reflecting on my life, I can almost guarantee that I am not going to think ‘You know, I wish I would have spent more time at work.’ It was with this clarity that I started approaching life – I try to be so present in every moment and I try to avoid using expressions like ‘I can’t wait…’ because although I am looking forward to next week, my birthday and Christmas,
wishing away the present makes for an unmemorable past.
Antonia: We all have challenges in life, face hurdles. Some people actually end up giving up on something they’ve started because of the challenges and hurdles. In your situation, giving up was not an option, I read about how you were not about to let cancer get in the way of your social life and your outgoing personality and your humor. What are some of the challenges and hurdles you faced living with breast cancer and how did you overcome them.
Katie: Well, I’m not sure if I’ve overcome many of the challenges that cancer has presented me with however, I have found a way to deal with them or to detour around them.
Being diagnosed with cancer in your twenties is a sure way to be isolated from the rest of your peers. Very quickly, I learned that ages 19-39 are considered the ‘forgotten generation’ when it comes to cancer. We are too old to be considered ‘children’s cancers’ and too young for there to be any viable data that relates to our unique cases. I don’t know how many times I heard ‘Well, we don’t have any data on someone your age’ and then my medical team would apply the research that they had on women in their 40s, 50s, and 60s, to my treatment plan. My friends had no reference to help deal with their friend who had cancer while they were focusing on the latest ovulation kit or the sweetheart neckline on their wedding dresses. Many times, when my mom and I were together in a mastectomy shop for example, the sales lady would always approach her and she would have to say ‘it’s not for me, it’s for my daughter.’
Needless to say, in many different situations, I was forgotten about in my own cancer journey.
So, I did my best to connect with other young women who experienced the same isolation as I did and together we were united not divided. I also tried to help change the way we look at breast cancer by writing about it, speaking about it, and screaming it from mountain tops that young women can get breast cancer too. I’ve taken part in every study, research project, and collection of data that I have found out about that has to do with breast cancer so that the next woman who is diagnosed at the age of 26 doesn’t have to hear ‘we don’t have any data for someone your age.’
Not Being Able to have Children
Ugh, fertility is the next big one. Five days after I was told that I had cancer, I was told that after chemotherapy, I would have only a 40% chance of being able to have children. I am the one who has wanted children since I was four years old and now that chemo has taken its toll on my ovaries, I may never get that chance. It’s safe to say that I cried more on the ‘60% chance of not being a mom’ day than on the ‘you have cancer’ day. From that day forward, my fiancé and I have decided to focus on surviving cancer rather than parenthood. It became clear to us that there was no point in focusing on having children if I’m not alive to raise them.
The specific drug that was hardest on my reproductive organs was cyclophosphamide – and once the IV bag of this anti-baby making drug was prepared and sitting beside me waiting for a nurse to hook it up, I would always have a pep talk with the bag. I would say ‘Listen, we are on the same team here, we both want the cancer gone but if you wouldn’t mind, I would still really like to keep my ovaries in good condition, so do your best to focus on the cancer.’ Was that crazy? Yeah, probably. Did I have much of an alternative? Not really. We will know if those pep talks worked in another three and a half years, once I am off my cancer drugs currently keeping me in remission. Until then, I am hoping for the best. I picture a future with children but am also realistic that we may not be blessed with them. I have tried to tell myself that if we can’t have children that we will be able to travel all over the world and we will be afforded the opportunity to have richer tastes. That is certainly no consolation however it is the only thing that I can hold onto.
I haven’t overcome this challenge but I have come to terms with the idea that what I had planned for the past 24 years may not be a reality for me.
Loss of my Womanhood
Finally, one of the biggest challenges that I still struggle with is the loss of my womanhood. I don’t think this is an age specific challenge however, being double mastectomied, I will never be able to breastfeed my babies (assuming that I will be able to bear children). Although I did not feel like a woman simply because of my breasts, I certainly appreciated the way they made me feel like a woman, the same way my curves make me feel womanly. I often wonder that with no breasts and not being a mom, if I am still considered as much as a woman as other women in their twenties who have not had cancer. I’m not sure if I will ever overcome not feeling like a woman, but I am starting to get used to it. I really try to rely on the whole ‘inner beauty’ thing but sometimes that just doesn’t cut it, sometimes, I miss feeling pretty.
Antonia: After the treatment, I read about how you felt a void, an unfilled spot in your soul that needed to be filled. Can you talk about the loss you felt? What did you do to fill that void?
Katie: I have learned a lot about loss. I have lost both breasts, I have potentially lost the opportunity and ability to reproduce, I have lost my twenties, I have lost my naiveté (boy, do I miss that), and I have lost my confidence in my body not to betray me.
I still feel that void, to this day. I try to fill it by helping others dealing with cancer.
And I have found that by doing things that are out of my comfort zone, I am living more than I ever have before.
I still struggle to not only fill the void that cancer has left me with but I also struggle to describe it to those who have never been diagnosed. I live in fear that the cancer will come back, I search for more in life than ‘getting through’ the days.
I wonder how to give back in a grand way – it’s like by having cancer, I’ve learned that there is more to life than life itself and I am now in constant search of more (Yikes, I didn’t mean to get that deep, it just happened).
Antonia: You went to India for 2 weeks volunteer work. At first you were afraid to go. Why? How would you best describe your experience there?
Katie: India has never been on my bucket list and when I thought about going, it made me nervous. I have traveled to over 15 countries in my 28 years but I have never been anywhere like India. It’s a developing country, with sometimes different ideals, different ways of life than I’m used to, a lot of poverty, and a place where women’s rights aren’t always recognized – to say I was out of my comfort zone thinking about traveling there is an understatement.
Once I got there, I saw the beauty in India.
I saw it as the teacher that I was hoping it would be.
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 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/(insert anything else that you can’t buy with money here) but until you see someone surviving, 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.
Antonia: I read the article you wrote after having spoken at the National Women’s Show. You had quite an “epiphany”, can you talk about that?
Katie: Within a week of being diagnosed, I convinced myself that I had been diagnosed because I had the moral and emotional support to one day help others who were dealt the same shit hand as I was but who didn’t have the support. Very early on, I started writing a blog, speaking at events and volunteering with local, provincial and national groups that focused on the specific needs of (young) women with cancer.
I agreed to speak at the National Women’s Show in April. I was asked to speak for about 20 minutes and up until the day before, I was looking forward to it. The morning of the event, I started getting nervous, which, to be honest, isn’t usually something that happens to me when it comes to public speaking.
We headed to the women’s show at about 11am and as my mom and aunt went from booth to booth my stomach got tighter and tighter. I read that there would be 35 000 women going through this show during the weekend and although I saw the stage that I was speaking on and saw that there was only room for about 40 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 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 2:30 PM 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?
Antonia: Katie, we all know for a fact that we will die someday. Yet, most of us put things we really want to do off or ignore the most precious moments in our life. What would you say is the best life lesson you’ve learned we should all know about.
Live! Your! Dreams! Today!
If you wait until all the stars align to go on that trip that you’ve wanted to go on for twenty years, to put in that dream kitchen that you’ve been looking at, or to take expensive French cooking classes because you’ve always wanted to go to France, you’ll never do it. When have you ever had that extra $5,000 lying around that would pay for that trip to Africa, for that safari that you have always wanted to do? Never, that’s when.
At 26 years old, I was headed down a path of workaholism, and then cancer slapped me right across the face. Still weeks after my diagnosis, I kept thinking about work and then my medical team told me that I would need to take a year off work. Ha! ‘cause I have time for that! And then, miraculously, after my first mastectomy, work didn’t matter anymore.
I mattered. My health mattered. Life mattered. Not dying mattered.
I will also tell you that before I was diagnosed, I never wanted to get married, it wasn’t important to me because I was surrounded by divorce and didn’t want to go through the pain of it myself. Within a week of being diagnosed, I thought, ‘If I die, I want to die as Keith’s (my then boyfriend, my now fiancé) wife.’ I hadn’t realized how important marriage was to me until it was maybe going to be taken away.
In saying that, traveling has always been very important to me and since I have been diagnosed, Keith and I have been to NYC at Christmas time (a must do trip), I’ve been to Alberta – a province that I had never been to before and would totally consider moving to, and I have been to India on a two week volunteering trip with 11 other cancer survivors.
I don’t own a house, I have tens of thousands of dollars in student loan (three degrees and six years of university worth), I have a monthly car payment and am now trying to plan a wedding, money is not exactly spilling out of my wallet but paying off debts and never leaving my couch isn’t living. Now, don’t get me wrong, I have never missed a payment (car, student loan, rent or otherwise) and I don’t suggest that you do either but I am living proof that you just don’t know what life has in store for you and that trip that you’ve always wanted to go on, if it makes you happy and there’s a part of you that isn’t complete because you haven’t been on it,
I say find a way to do it. Make it a priority. Live for today because tomorrow isn’t a certainty.
Antonia: Do you have a message for anyone who is going through cancer treatment who might feel alone?
Katie: While my friends were planning wedding and having babies, I was stuck in a chemo ward surrounded by people usually old enough to be my grandparents. Breast cancer in your twenties is isolating – every pamphlet that I could find and so many of the resources out there were geared towards women my grandmother’s age. Who could I relate to? I was so worried that I would never be able to have children because of the harsh chemicals of chemotherapy while most of the literature spoke to women who had already been through menopause. I felt guilty for something that wasn’t my fault, I was afraid that cancer was what was going to kill me before my 30th birthday, and I started to become afraid of living in fear of dying.
After I spent months beating myself up about how I was reacting as a cancer patient,
I realized that there was no right way to be a cancer patient.
There is no right way to react to a bad scan, no right way to wait for results, no way of knowing how many times a day you were allowed to cry or scream; there is only the way you do it. Once I gave myself that license to experience my cancer however I saw fit, it helped. Once I realized that I didn’t have to justify my actions to anyone but myself, I started feeling like I was allowed to have bad days and allowed to be scared without feeling guilty about it.
And also, this may seem like an odd thing to suggest but I have found that social media has been an essential part of my recovery. Facebook has been wonderful for getting the support that I have needed from people I know and love and Twitter has been wonderful for getting support from people who know how I feel. The great thing about Twitter is that you can hide behind a username and still get the information and support that you need without ever having to reveal the real you. I have been very honest through Twitter however, you could make up an alias just as easily and still feel supported.
Antonia: Do you have any projects coming up?
Katie: I have projects every day. Currently, I am healing from my most recent surgery, that’s my focus for now but I always have a few things on the go. I volunteer for five different cancer groups and try to do my part to give back. I would like to write a book about overcoming adversity, about managing to get out of bed every day after having cancer and not only getting through the day but also enjoying it. I have plans to start a website where women can go for up to date studies and research about cancer, treatment, reconstruction and the like and where they can feel like they belong. I am planning a trip for next year that involves a group of women claiming their nipples back via 3D areola tattooing. I am continually speaking at events to share my story and talk about my experience as a cancer patient. I am also always writing to both educate others and validate the feelings of other women going through cancer. I am always looking to be more involved in the cancer world.
Katie, Thank you so much for sharing your experience. With your beautiful attitude, you have been a source of support for many who would otherwise feel alone.
Please, share with someone who might just need to feel they’re not alone.