A Long Cold Trek to Loving Yourself

To have someone who understood what I was going through and could guide me along the way would have been whipped cream and a cherry on top, but for most of my experience, it was like climbing up snowy mountains, sliding across an icy pond, and then through a winter storm. Not until a year ago was I actually able to sit and enjoy the snowflakes and see that the years prior were super hard, but they got me to where I am today. It would be a long cold trek ahead, but there would be light shining through a little more each and every day.

At 29 years old I was diagnosed with triple positive breast cancer as well as discovered I was positive for the BRCA gene. I was the only young adult who I knew to ever receive a cancer diagnosis and I had no clue where this new road I was on was going to take me, so I leaned on my oncologist and breast surgeon for knowledge and care. As far as care and support outside of my medical team, I tried looking for it in family and friends, but most were unfamiliar with what I was going through and going to be experiencing that it was difficult to find many to lean on other than my husband.

The first few days were a blur and filled with shock. I hardly remember what was said or how I was feeling, but I can close my eyes and remember the day of my ultrasound, first mammogram, three biopsies, and the first day at Northwestern Memorial Hospital. I remember every room I sat in, each doctor I met, and who joined me in the waiting room or doctor’s rooms. Thank goodness I had someone with me that had a notebook and pen to write the conversations down so I didn’t have to absorb it all quite yet. I could just sit and try to breathe. There was so much that I was going to go through that my 29-year-old self couldn’t even imagine. I had no idea how emotional and exhausting it would be as well as the roller coaster I would be on.

If I met someone newly diagnosed, what would I say? What advice would I offer? Being your own advocate and educating yourself would be one of the first things I would say to someone just diagnosed with cancer. You might have known someone who had cancer, but their experience isn’t going to be yours. Only you know your body and what you are going through and only you can advocate for yourself. Find out if you have a family history of cancer—any types. This will help you to understand if it’s genetic or not. Next, the doctors have a certain amount of time for each appointment, but you still deserve to get the answers to your questions as well as share how you are feeling about the process. Find a notebook and take it with you to all of your appointments. Take notes or have someone with you do it for you and write questions, things that they say, how you are feeling at that moment, or anything else you think you could benefit from. The next time you have an appointment, ask one of the questions or share how you are feeling. There is no doubt that you are going to be scared and anxious, but to name it and share it with your medical team or even those close to you can help you not just physically but mentally. Also kindly tell your friends and family that the people they know with cancer are not you and you are going to have a different experience than them. You appreciate them sharing their story or wanting you to talk to them, however, you don’t need to hear all of the ways someone’s Aunt P. was healthy, did all the right things, and treatment didn’t go well. You can just politely say you aren’t ready to talk or hear someone’s story.

A cancer diagnosis can have many side effects pending on the treatment. Brain fog and loss of taste from chemotherapy, loss of sensation, restricted range of motion from surgery or burns, and discoloration from radiation. I found some amazing lotions with calendula for burns, citrus beverages and non-metal silverware for chemo, and lots of pillows for surgery. These effects are something that your medical team will share with you, however, there is one thing that many will never know, and that is how much your nervous system is going to go out of whack! It wasn’t until two years after I completed my final Herceptin treatment for being HER2+ that I crashed and burned. After receiving my diagnosis, I put blinders on and never looked back. I plunged through IVF, egg retrieval, chemotherapy, losing hair, breast surgery, radiation, breast reconstruction, and doctors appointments. 

Then came the day that I had my survivorship meeting. I left thinking, “So now what?” I don’t have full-day chemotherapy every three weeks. Yes, I would have to go in for Herceptin, but it was for 20 minutes. I don’t have consistent check-in appointments with the oncologist or surgeon. Yes, I would go in for follow-up appointments every three months and then six months. I never stopped working, but now instead of being home, I’d be going back into the office. I was now on Tamoxifen to help with any recurrence, but was it going to work? It was a lot to take in, but because I am who I am (well, at the time), I pushed through and kept on living. How could I stop? I never took time for myself. I struggled on the chemo days when I was so tired. I pushed so hard to stay up until Benadryl won and knocked me out. I pushed and pushed through being uncomfortable at work with no one knowing how to act around me. I started realizing how little support I had through my treatment and how lonely I really was. Work became too uncomfortable, so I left. Instead of taking time off, I jumped back into a new job. I was only a few months in and my body had had enough. I was supposed to work a gala, and that morning I broke. I broke into millions of pieces. These pieces stayed together for three years too long. I held it together through it all—for myself, for others—and now it was time for me. Many times we focus on the physical, which is important, but the emotional toll that a cancer diagnosis takes on your body during treatment and into survivorship is strong. Ask about ways to support yourself on good days and bad days, what you can do to take care of yourself while you are thinking and feeling all sorts of things!

A cancer diagnosis can bring about feelings for everyone around you. Many say to ask for what you need, but it’s not that easy. Young adult cancer patients are going through this for the first time. They don’t know what they are going to need at or after treatment, at home, at work—mentally, physically, or emotionally. I never directly asked for help, but because I didn’t do this, no one provided help or support. I’ve learned that as much as you might feel that family and friends should just come around and do things for you, that may not be who they are. I recently read a story about a mom who was diagnosed with breast cancer and she made a list of everything she wanted. She didn’t want food, she shared what she and her family “needed” and what they didn’t need. I love that she thought to do this. I wasn’t in a place to ask for help or tell people what I needed. After reading her story, though, I would implore all those who receive a diagnosis to take a few minutes and think about what they need—and that can be help with food, chemo companion, a ride to and from radiation, or visits during the good weeks of chemo and not just the bad, a friend to walk down the block with. This can help to avoid someone saying you didn’t ask for help or, “I didn’t know what to ask for.” A list of needs can be passed around and hopefully, there are those around you that can choose from the list. If you don’t have anyone near, there are many organizations that are waiting to help. Speaking of organizations, back in 2015 there were definitely not the number of communities there are today. Over the years, I wanted to make sure that no one felt alone like I did, so I started to share my story and compile nonprofit organizations and businesses supporting the cancer, mental health, and wellness communities. I titled it Liv & Let – Thriving Through Breast Cancer.

There are many things that I wish I knew nine years ago, but I’ve made it here today. I may not have sought out therapy or healing services right away. I may not have asked for help or written down the list of things I needed. I may have not asked all of my questions or felt truly educated about what I was going through, but it’s never too late to do these things. If I could say one more thing to someone who was just diagnosed, it would be to love yourself. It’s not easy and there is no sugarcoating what you will go through; however, our bodies are strong and if you treat it well and love it you will get through it one day at a time. You don’t have to put blinders on and go forward. You can laugh, you can cry, you can grieve, you can have more than one feeling through all of this and it’s OK. Treat yourself to clean beauty products, take a walk around the block, read a good book, and watch ten movies one day. Taking care of yourself during treatment is important in entering into survivorship, another journey that is different for everyone, and I could write all about another time!