Living Beyond Breast Cancer: The Fear of Missing Out

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Photo Credit: Gambol Photography

After one cycle of IVF, egg retrieval and preservation, 6 rounds of chemo, and 2 surgeries I thought I was done missing out on all the fun. Turns out I was wrong once again. It’s like a sick trick. Each day of your fight, you use the end of treatment as your goal post, your milestone for success and completion. But once you get there, you realize that the end of treatment is only a rest stop in your never ending battle. A milestone worth celebrating for sure, but far from the end.

Many people don’t understand this. They think the end of chemotherapy or radiation marks the end of your fight. I can’t fault them for this misconception, because a year and a half ago I too was uninformed. Unfortunately, this is one of the biggest misconceptions surrounding a cancer diagnosis — life after cancer and what it’s really like. Hormone blocking therapy, regular doctor’s visits and reconstructive surgeries and revisions will continue to be my reality for  many months and years to come. I’m looking at 5-10 more years of maintenance treatment, all of which has everyday impacts on my life. Joint pain that limits the use of my thumb and dominate hand, hot flashes that keep me up at night, weight gain that impacts my self esteem and a plethora of other menopausal symptoms that impact my body from head to toe. So life is far from normal for me.

Despite the ongoing symptoms and struggles,  I did what most survivor do post-treatment. I decided to make the most of this life I have to live. Cancer was a wakeup call to live in the moment and enjoy the things in my life that continue to bring me joy. I threw myself back into work, exercise, and my friendships. I took advantage of every opportunity to share my story and work on breast advocacy and awareness in my community. For the past 8 months since my last major surgery, my life has been a pretty amazing whirlwind. I received a promotion at work, grew my blog to new levels, traveled to Europe, collaborated with amazing organization to spread awareness about young women with breast cancer  and started the first Raleigh Young Women’s breast cancer support group. I even walked the runway in a World of Pink Fashion Show helping raise over $20,000 for women battling breast cancer in Long Island, NY.

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The more I invested of myself into these amazing causes, the more projects I took on, I began to hear a little voice in the back of my head warning me to slow down. I knew I needed to rest, take a breath, but things were moving so quickly and I didn’t want to miss out on a single opportunity. I’d spent enough time missing out while I was sick, this was my time to live! I wanted to help every young woman who came into my life and wanted to make a difference in the fight again breast cancer.

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And then the flu hit. Now some of you may be thinking It’s just the flu what’s the big deal. A few days off work, a few days in bed and you’ll be back to normal… but for me this was like treatment all over again. Post Traumatic Stress Disorder at its best. As I sat in the bathroom hugging the toilet, heaving, the chemo nightmares returned. The fear that I would never get better, and that everyone would move on without me took over my psyche. The fear of never recovering from this stage of physical misery snaked through my veins.

Though, a sane person like myself can differentiate the flu from chemo, the symptoms are actually quite similar and you can imagine how the memories flooded back like a song triggering long lost emotions. While reliving the worst days after chemo (and the dreaded Nuelasta shots), what I remembered the most was this sadness of feeling left out — forgotten. I was fearful and uncomfortable missing out on all the fun and the normal stuff.  Sick in bed fighting for my life,  while friends, family and coworkers went about their days enjoying the everyday moments and adventures that life has to offer. I remember feeling alone in these emotions, selfish and confused.

Though almost a year of recovery and live beyond breast cancer has given me a sense of growth and perspective I can appreciate, I share these feelings today to let other women know that you are not alone. I share these feeling to remind you that the fight does not end on your final chemo day, or your final surgery day. When your physical battle wanes, your mental battle begins.  You may want to make up for lost time, still fearful of missing out on the moments you used to take for granted. But, it is enough to just live! Sometimes I forget this trying to jump back into the full speed race I was in before. But I can’t maintain that pace. I had to get sick again to remind me to slow down, remind me yet again that I am not invincible and I have to take care of my body. In order to do this, I have to create a new path. One filled with balance, self care and gratitude. I may miss out things my friends, colleagues and family will experience but I just have to believe that better things will be waiting for me around the next bend. Here’s to my new journey, my new path, and may it be a very long one!

Photo Credit: Gambol Photography

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13 comments

  1. NS says:

    Awesome post….I am post- chemo facing surgery and reconstruction and perhaps more chemo/ radiation post- surgery. I think a lot about life after this nightmare and wonder what my new “normal” will be. Thanks for shining a light on this often misunderstood topic and sharing your perspective.

    • Anna says:

      I had the exact same feelings when I finished chemo. I was scared for what life would be after. I can tell you it is amazing and it is still a lot of work! You will take each day one step at a time and count each blessing. Take time for yourself and realize the battle doesn’t end at the end of surgery, chemo and radiation.

  2. Jessie Bishop says:

    You amaze me every day! I think everyone feels scared when they get really sick like you’ve been, but I can only imagine how much scarier it must be for a cancer survivor like you. All the flashbacks, as you mention.
    It is easy for an outsider looking in to forget that you still have a lot ahead of you when you’re on your feet and doing all the amazing things you do. I promise I will endeavor to remember that you’re still in the midst of this, even if chemo is over. I also promise to try to get you to slow down from time to time, however Herculean that task might be. Love you. Great post, as always.

    • Anna says:

      You always lift me up and support me when I can’t find that strength and inspiration myself. I am so lucky to call you a friend.

  3. Toni Pearce says:

    Anna, thank you so much for sharing. My husband and I just left the Raleigh area and moved to CT for his work. I have been struggling with my identity and trying to grasp the idea of being a survivor, engaging in life, and accepting the pause on starting a family. Since we’ve been up here Im trying to be proactive and get enrolled with support groups and community activities. However, I feel very left out and scared going through the expander thing, beginning tamoxifen, starting with a new team Medical team, while all our family and friends continue on with life back home. I’ve been following your blog for the last few months. I can’t express my gratitude I have for you. Your words are so eloquent, yet speak raw truth. Thank you for opening your heart and being an inspiration for others. Hope you’re feeling better and finding a balance in life.

    • Anna says:

      Toni, I am so glad you find my blog and I am so proud of you for putting yourself out there and trying to get involved. A big move and being a survivor leaves you with many feelings to juggle. Make sure to give yourself the gift of patience and understanding just as you would a friend. I can only imagine how hard it is to move in the middle of everything. Thank you so much for following and I wish you the best in your journey. Stay strong and know that it will get better thought there may be plenty of tough days between now and then.

  4. Joanna says:

    Beautifully written! I’ve struggled with what I’ve been feeling on my worst days of chemo – and the fear of being forgotten is exactly it. I know I’m not forgotten, but you can’t help but let your mind wonder to everyone else who is not having a bad day. I hope you get to feeling better soon!

    Another reason why it’s so important to have cancer girlfriends who get it 😉

    • Anna says:

      Thanks Love! I am so glad to know I am not alone. Each time I write these posts I am afraid no one will understand or I will end up feeling too vulnerable for sharing. Luckily I have been wrong so far. Cancer friends are the best! They just get what you’re feeling. Sometimes I find I am scared to share these emotions with with close friends and family for fear they will see “ridiculous” or “selfish”. During treatment and after I feel like I am just a rollercoaster of emotions. I guess it’s better to just accept the emotions and roll with it.

  5. Patricia Leary says:

    Another powerful post, Anna. You are always in my thoughts and my daily prayers and heart. You share your journey in such a warm, compassionate, heartfelt way and it helps me understand what you are experiencing. Reading the many comments your writing has inspired tells me you are helping many MANY others. Taking care of YOU will give you the energy and strength to continue – smart choice. I love you.

    • Anna says:

      Your continued support means so much to me. It’s so wonderful to be able to share this part of myself through my writing and connect with so many people both strangers and friends and family alike. Thank you for continuing to follow my journey and join the conversation.

  6. THERESA L MURPHY says:

    I AM SO PROUD OF YOU AND YOUR MANY ACCOMPLISHMENTS YOU REPRESENT THE MANY STRUGGLES THAT WOMEN FIGHTING CANCER AS WELL AS OTHER SERIOUS ILLNESSES FACE WHEN YOU LOOK SO BEAUTIFUL AND HEALTHY ON THE OUTSIDE AND THE INSIDE YOU CONTINUES TO FIGHT EVERY DAY. THANK YOU FOR SHARING THIS POST. I AM KEEPING YOU IN MY THOUGHTS AND PRAYERS. TAKE GOOD CARE OF YOURSELF…THE NEW YOU HAS A LOT TO OFFER THIS WORLD! XOXO

    • Anna says:

      That is so true. What’s on the outside does not always reflect what’s going on inside. You never know what struggles someone may be facing. I try to live with that mind.

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