Would you believe me if I told you that before cancer, I used to be the shyest most reserved person you had ever met, and I would have done anything to avoid talking about my own feelings, personal thoughts, or struggles?
2 years ago, Cancer was NOT even on my radar. In fact, Cancer was something that I thought happened to other people, not something that I thought would ever happen to me… Until it did.
As many of you know I found the lump myself, but not because I was doing a self breast exam. I found it because I had been experiencing really sharp shooting pains in my chest pains for at least 6 months. When the pain was bad I would push the palm of my hand up against my chest. That’s how I found the lump. I didn’t tell anyone about it for a few weeks, but my mind was filling with fear and all I could think about was the fact that cancer could take me from my family. After doing a lot of research I realized that I had to tell my husband….. and I had to make the call. I saw my OBGYN first. She said that based on my age alone most doctors would recommend watching it for 6 months, but she said she wasn’t going to take any chances with me because she had a family history of breast cancer. She sent me for a mammogram, an ultrasound and Biopsy right away to rule out cancer. After two mammograms, I was sent to have an ultrasound. My technician was about midway through the scan when she said she had to talk to the radiologist. She tried desperately to make it seem like a routine part of the process, but I was starting to see realize what was happening. She was gone for at least 20 minutes so I had a lot of time to let my mind wander but I was oddly no longer thinking all the scary cancer thoughts, instead my mind was racing with moments from my life that made me feel like that exact moment was all part of a bigger plan for me.
Right away I thought about losing my non-blood aunt to breast cancer when I was just 15, I thought about how she was told she was too young for breast cancer when she found her lump in her late 30’s, and how on the day she passed away I made two promises to her and to myself. I promised that if she couldn’t be here to do all the good she was doing, then I would be and do the good for her, and I promised that I would someday fight to change the mind-set that younger women are not at risk for breast cancer. I thought about my friend Vicki and how on the night I met her, I told her that she reminded me of my aunt. How just a year later she too was diagnosed with Breast cancer, and how our friendship really grew when we teamed up to campaign to get her on the Ellen show to share Breast cancer story. I thought about a reoccurring dream… OK a reoccurring nightmare that I had for months just a year earlier after watching the Parenthood episode where one of the pain character was diagnosed with BC. The dream that I was the one in the hospital bed, that I was the one being told that I had breast cancer, and that I was the one that was going to be taken from my family. I thought about how I used to wake up sobbing every night, and how I told my husband that I couldn’t shake the gut-feeling that I was going to get breast cancer myself and be taken from my family just as my aunt was taken from all of us. I remember him saying “Tammy you are not going to get breast cancer. No one in your family has had breast cancer”. I thought about the fact that in my last yearly appointment with my original OBGYN a year earlier, she had forgot to do a breast exam, and although I didn’t feel comfortable with it, I said nothing. And finally I thought about how everyone nurse and technician that I met that day seemed to be very emotional while in my presence. But then something crazy happened. In the minutes before my technician came back into the room, my life literally flashed before my eyes. I wondered was my Aunt trying to send me a message the year before when I started having those dreams? Was she trying to prepare me? Was there a bigger reason why Vicky came into my life and my heart and why she reminded me so much of my aunt? My heart was racing and my mind was spinning a mile a minute. And then it just hit me. None of this was a coincidence. Everything in my life had been preparing me for this very moment. Cancer was always in the cards for me. Just like that, my mind went silent and a very strange calmness came over my entire body as I prepared myself for what was about to smack me in the face.
“I remembered a quote that Vicki had given me few years back.
“Life is not defined by what happens to you, but by the way you respond to it.”
In that moment I vowed that I wasn’t going to let cancer win, I promised that I would finally make good on the promises that I made to my aunt. I promised that I was going to do everything in my power to turn my negative into someone else’s positive. I know it sounds crazy but I couldn’t shake this feeling that this was all part of a bigger plan even though I had no idea what that meant. So I decided while laying on the table that I was going to take a giant step outside of my comfort zone and for the first time in my life I was going to release my control freak tenancies…. and just let this journey take me where I was meant to go. Minutes later I was lead into the Radiologist’s office. He asked me to sit down and started showing me things on my scans while giving me what seemed like no information at all…. and then the words just came out of his mouth. I think this is pretty serious. I think you have two different forms of breast cancer.
I had a biopsy to confirm what I already knew in my heart to be true but my mind
was no longer filling with fear. I had kind of accepted what couldn’t change and I was facing it head on. My biopsy nurse Jan and my Radiologist Dr. Kreuzer were both amazing, in fact the connection we made on that biopsy table has now turned into a beautiful friendship. During my biopsy we laughed and joked around,
but there was a moment that I asked my radiologist if she could tell me what she was seeing. She paused for a moment and said, I’m pretty certain we are dealing with cancer. I just remember looking up at her and saying…. OK with a long pause and then saying that I am finally going fight for screening in younger women. I am pretty sure she thought I was crazy.
My world was crashing down around me in those first few months and everyone around me seemed to be full of fear and emotion for what was to come, but oddly didn’t really cry or even fall a part for months. I had my game face on and I was ready to fight. In a matter of a few days, I was told I had cancer, that I would have to lose both my breasts, that the treatments would cause me to lose my hair, and that I wouldn’t be able to have the second child I so badly wanted. I was diagnosed with Invasive Ductal Carcinoma and DCIS, I had 5 good-sized lesions in my left breast and calcification throughout, with lymph node involvement.
Over the past 2 years it seems like I have spent more days in the hospital for surgeries and infusions then I have outside of the hospital, I have had 14 surgical procedures to date including a bilateral mastectomy, an emergency egg harvest, an emergency surgery to remove an infected tissue expander, multiple reconstruction surgeries, 3 rounds of fat and tissue grafting, the preventative removal of my tubes and ovaries, and a chest tube placement to correct a spontaneous pneumothorax. I was put into medical induced menopause at the age of 33. I have had multiple infections requiring lengthy hospital stays, 6 months and 18 rounds of chemotherapy, 28 rounds of radiation, and I will be on hormone therapy for the next 10-15 years, which has already caused the early onset of Osteoporosis, bone deterioration, and pretty severe joint pain that has limited how active I am in my day to day life. However, in the midst of all the darkness I found a silver lining.
I was finally able to make good on those promises I made to my aunt 20 years ago and become the person I believe I was always meant to be. I knew on day one that I wanted to do something with my diagnosis, however I had NO CLUE what I was actually signing myself up for. In those first few days I had reached out to an amazing photographer that I didn’t know at the time to ask her if she would be willing to help me document my story; but not because I thought I was going to be sharing photos with the world. I actually wanted to put a book together for my daughter so I had something to leave her if breast cancer was going to take me from her in the same way it took my aunt from my cousins and from me, I wanted her to know that her mommy was strong. That her mommy didn’t give up, and I wanted her to know that even during my hardest days she was and is my biggest reason to wake up and fight. I started a facebook page because I couldn’t keep up with all of the calls and messages and I wanted there to be one place where my friends and family could get updates, but from the moment I sat down to write my first post, I was able to unintentionally take off the mask and let all of the feelings and emotions that were consuming my inner being escape the mental cyclone of my mind and flow directly to my finger tips. Oddly it came quite naturally for me, and best of all it lead to a response that not only motivated me to become an advocate in fighting to break down barriers and show the world the reality that is actually behind that pretty pink ribbon, but it also turned an otherwise sad and painful struggle into something meaningful for me. With every step I took out of my comfort zone, came many heartfelt and thankful responses from women walking in my shoes thus strengthening my motivation to share what so many in my shoes keep hidden. Although it was never my plan to become a blogger, a speaker, or a very raw and real public example of a young cancer patient, the path seemed very much a part of the plan from the very beginning. Within just two weeks the local news station picked up my story and my page went viral locally which was also something I had never considered happening.
Right as I started to panic that I had bitten of WAY more than I could chew, I started receiving messages from other women who had or were facing breast cancer. They were thanking me for being their voice and for putting all of the fears and emotions they felt but could not express into words, and most of all for showing the world what a woman really goes through when diagnosed with breast cancer. I received messages from caregivers, nurses and even physicians thanking me for helping them to understand what we as patients were going through on more of a personal level, and I had women tell me that my willingness to share was the only thing getting them through their hardest days. Each thankful message lifted me up personally and made me feel like I was finally making the difference I vowed to my aunt I would some day make, and motivated me to step further outside of my comfort-zone and share even more. Eventually I followed my heart, and I stepped WAY out of my comfort zone by starting this blog.
I talked about how hard it was to put 2015 behind me, and how the fear of a cancer recurrence and the thought of dying is always in the back of a cancer patient’s mind even when we are smiling and having a good time on the outside.
I talked about the loneliness you feel as you go through something like this, and how hard it is to enter back into the world of the living when you no longer feel you can relate to normal everyday conversations and problems. I talked how hard it was to witness how quickly a breast cancer recurrence could take my amazing chemo friend Ann from her family… and from me full knowing I too could have the same fate. And I was trying to work up enough courage to address the financial strains of cancer, to talk about the fact that cancer killed all intimacy between my husband and I, and that cancer and been driving a wedge between my husband and I since day one. Before I knew it, my story was being shared on the Homepage of the National Susan G. Koman website, Spectrum Health asked to feature me in their “Taking Cancer Personally” campaign, including a giant Billboard on 131, and I was being asked to speak at local breast cancer events, which are all things the pre-Cancer Tammy would have never agreed to do. I wasn’t sharing everything, but I was sharing far more then I thought I would ever share, and I was doing things that I never thought I could do.
What will it will probably surprise a lot of you, is that I have found my second year post breast cancer to be even harder then my treatment year because for the first time since I stared my blog and set off on this crazy quest to bring down barriers and change the perception that younger women are not at risk for breast cancer, I was paralyzed by the ill thoughts of someone close to me when it was brought to my attention that this person didn’t approve of my sharing, in fact, this person is ashamed of me and what I am trying to do because this person doesn’t feel that this type of struggle or weakness should be made public. Worst of all my motives for sharing and advocating were thrown into question altogether.
If you know me at all you know that this hit me like a semi truck and has been tearing me up inside ever since. I have to admit that I never really understood what it felt like to truly be depressed. In a way, I believed that I should have complete control over how I responded to things and that I should be able to in a sense “mind over matter” a hard time in my life. There is even a part of me that believed that I should just be able to “choose happiness”, which is something I thought I had been doing my entire life. At the time, I hadn’t yet experienced a sadness that took over my world and paralyzed my mind leaving me motionless in the process. I hadn’t experienced the true feeling of numb to the point where I was literally just going through the motions of life without taking in the moments. I didn’t know what it was like to want to avoid contact with the outside world… even those I love the most, and most of all I had no idea what if felt like to really just want to sleep the pain away…..until the past few months.
Like most, my life has never been perfect. My defense… or really my shield has always been to hide any emotional pain or struggle behind my smile, distract myself with projects and work, and to choose optimism and happiness. This is something I have perfected over the years, so much that even I have fallen for my own front at times.
For the past year I have been trying to address the silence that has plagued my blog and the absence of my push for forgotten fighters, but most of all I have been trying to work through and process the worst disappointment one could ever feel. Being Disappointed in yourself. It kills me that because of the thoughts of one person, I have not let myself do what I know in my heart is the right thing to do. I stopped publicly fighting to raise awareness and I stopped being a voice for other women like me in sharing the truth behind the pretty pink ribbon. Worst of all I stopped responding to those who have reached out to me with gratitude, I have not been trying to make a difference by pushing my forgotten fighters campaign, and… I have not been bringing hope and inspiration to others walking this path. The truth is, I have written this update a 100 times full knowing that Is would be impossible for me to face the future util I addressed the past, but I have struggled to get over the hurdle and post. For the past year it has felt like my world has been crashing around me again. To be very honest with all of you, I have been in a very dark place. With each step untaken I have crept further and further inside myself and I have let the sadness and pain cloud the vision of what I believe I am on this earth to do. I questioned everything that I stood for and everything that I have become. I found it harder to be optimistic as I faced the medical obstacles that were being thrown my way, I finally hit my breaking point and felt the anger and the sadness that comes with a cancer diagnosis, and worst of all I started resent the beautiful mission that I believe is my purpose.
Although I could never catch you all up on everything that has happened in the past year in one post, I can tell you that in many ways year two was WAY harder then my treatment year. I faced more surgeries for post cancer complications and reconstruction and more painful recoveries, I finally hit my breaking point and actually felt the sadness and even the anger because of what cancer has and is taking from me, I made peace with the fact that I am still spending far more time then I would like at the infusion center to treat a medical condition that my cancer treatments and surgeries made worse, I faced the emotional struggle that comes with picking up the pieces of your life after Cancer and the fear and emotion that comes with living a life with the looming cancer cloud above your head. I experienced down-right scary finical struggles due to the on-going costs of post cancer surgery and care. I experienced the severing of relationships with people I loved for reasons that I don’t think I will ever understand. I faced the struggle of reengaging with a career after cancer and the transition from a full-time patient to a full-time professional with medial baggage, and I faced the very hard reality that sometimes it is not possible to “to mind of matter” life and choose happiness.
Although the past two years have been and continue to be the hardest years of my life, I have learned a lot about myself and grown in more ways then I could ever express. This person that caused me to question everything in my life may have caused an emotionally painful struggle, but this person has also unintentionally served as a great teacher to me in learning about myself and how I respond to the negativity of others in my life. I have again found focus, passion, and the drive to make a difference with my life. I have experienced pain, sadness, fear, reached limits I never thought I could never handle, braved a fight I never thought I would have to fight, and broken down when I promised myself I wouldn’t. I have learned that sometimes its ok, not to be “ok”, that not everyday has to be greeted with a smile as long as I keep hope in my heart. I have learned that I should not and do not always have to be the strong one among the group-although I still try to be. I have learned that it’s ok to be selfish sometimes, that it’s ok to take care of “me” sometimes and put my health before doing for others, and I have learned to have compassion for myself when I need it the most. I have learned that I don’t have to always be the perfect daughter, wife, and friend and that those who truly love me will understand when I just plain cannot go above-and-beyond. I learned that sometimes it’s ok to just not-be at all, to feel what I am feeling, to face what I am facing, to cry, to yell, to scream, and to accept what has become my life; because not feeling or facing those feelings, means that I will not only be carrying the physical pain with me every minute of everyday, I will also carrying the pain with me in my heart. I have learned that no matter how hard I try, there are battles in life that I cannot “mind over matter” and that no matter how hard I try I will not always have the support of those I love, that although I have always been a fixer, I cannot fix or control anything in this fight with breast cancer. I have realized that although I do not have control of my situation or how the rest of my life will play out; I do have control over how I respond to each and every struggle or bump in the road and most of all how I respond to what is still positive in my life. I have control over this person I am now and the person I will become.
I have learned that there is no time like the present and that life is far too short to sit around and talk about what you want to do, when you could be busy doing it now. I have learned that although my mind is sharp and full of unstoppable motivation and drive my body now has limits that can bring me to my knees in a moments notice. That I am strong, I am determined, and that I can take the high road in any situation, despite how it makes me feel, but I am also learning that I too, am human. I too feel sad that the unthinkable happened to me, to my husband and to my little girl, I have days where all I can see is what I have lost and what I will never get back; things that others around me take for granted every single day. I have days where I focus on the fact that so many around me are living care free lives, having babies and planning for their futures when I can no longer dream about another beautiful child growing inside of me and I no longer feel I can plan for my future. I have days where it’s hard for me to see past the post-cancer pain that only those who have been through it can understand. I sometimes focus on how alone I feel in all of this, how isolated I feel even when I’m standing in a group of friends, and how not many people in my life truly understand what I am going through every second of every day; the thoughts that are filling my mind in even the happiest moments, and how much of a mental and physical struggle it is to live a life during and after cancer. I think about society and how most people believe that after the treatment stops and your hair grows in, you go back to feeling like you, that you go back to life as it was and how this common misconception couldn’t be further from the truth, as my days are far harder now then they were I was going through my chemo treatments. I have learned about people, how cancer has allowed me to grow closer to some in my life, yet because of cancer I have watched a distance form between some friends and family relationships. I have witnessed a community of supporters rise to surround me with help and support, I have been humbled by the generosity and kindness of those who love me and by those who have never met me, and I have realized that although some of the people I really thought would be by my side—are not, others who I never would have guessed would be holding me up-have walked into my life and my heart with their arms wide open. I have learned about family, how important they are in a time of need, how nice it is to know you are loved, and how important it is to have them by your side when you face your own mortality. I have learned that although it is hard for a “people pleaser” to dismiss what others think, feel, and do, it is best not to judge yourself based on the actions of others. Most of all, I have learned about myself. How strong I am right to the core, how brave I can be, and how driven I am to fight for something I am truly passionate about. I have learned that I shouldn’t pretend to be ok, when I am not — although this will I’m sure be a lifelong adjustment. I am learning that although I am strong, brave and determined, I am also wounded, sad and broken… and that is ok. During the hardest struggle of my life, I have found joy, happiness, love, and I have experienced a very natural high on life in finding beauty in every moment.
A few months back as I struggled to write and post this update I got a call from Creative Mornings Grand Rapids. Creative Mornings in an international breakfast lecture series focused on inspiring creative minds in the community. Speakers are chosen based on the universal theme. In the week leading up to the date I vowed to post this update and address what had happened and what was happening inside of me, I was contacted by Creative Mornings, and asked if I would be willing to give the March Creative Mornings Lecture on the topic of Taboo. I remember getting goosebumps when Molly, who is the host, explained the theme and why she thought I was the perfect person to give this talk. She got teary-eyed listening to me explain the significance of her asking me to speak on that topic that day. After countless hours of worrying and more or less freaking out…. I realized that this too was a sign of what I needed to do. So I faced my fears and gave the talk wrapped around exactly what it was meant to be about. It only took me 5 months to share it with all of you. My lecture is very similar to what I have written here, but feel free to check out the video from this event below: