Survivor Stories -- Jennifer Steen-Reavis
I celebrate 12 years of survivorship this year after being diagnosed at age 29 with Triple Negative Breast Cancer (TNBC). It was already in my lymph nodes. I did upfront surgery with a lumpectomy and axillary lymph node dissection, as neo-adjuvant treatment (chemo before surgery) was not really offered at that time. This was followed by dose dense Adriamycin and Cytoxan chemotherapy given once every two weeks for 4 cycles. Next up was dose dense Taxol chemotherapy given once every two weeks for 4 cycles. 35 fractions of radiation therapy came next. And since then there's been the continuous physical therapy for lymphedema. It's been quite a ride.
When you are diagnosed and in treatment, you cannot imagine that anything could be worse. That is, until you are told you are “good to go” and “we will watch and wait” and then the hardest part of the journey begins. Survivorship. Learning to live with the diagnosis and trying not to look over your shoulder everyday wondering if the cancer is going to come back and take your life. Learning that every ache and pain DOES NOT MEAN YOU HAVE METASTATIC DISEASE. Learning that even when you reach the milestones….year 1, year 2, year 5 after diagnosis, that even then, the fear does not completely go away. It truly takes the better part of 1-2 FULL years post-diagnosis and treatment before you stop waking up and going to bed with cancer as the first and last thing on your mind. But it happens. One day, the switch goes off, and you find yourself thinking, “huh, I haven’t thought about cancer yet this morning.” And that is when you know you are truly healing from the inside out. The outside scars do not compare to the ones inside. You learn to start trusting your body again, your senses are more clear, your outlook different and wiser for having suffered, and gratitude starts to be the feeling you return to again and again.
People often ask me, "what's a helpful thing I can do for a loved one diagnosed with cancer?" One of the things I remember being extremely helpful was a friend who offered to set up a CaringBridge webpage for me. She continued to update it until I could take over. Returning phone calls, texts, and e-mails felt overwhelming, so directing everyone who wanted to help to the website was an amazing way to stay connected without increasing my anxiety, draining my energy, or continually repeating the latest news. Too many times, friends would not know what to say so they would share stories of others with breast cancer, some who died of it, the choices they made, advice on what I should do, what diet I should be on, what supplements I should take, what alkaline water I should drink, what magnets I should wear, how often I should do coffee enemas, and so forth. I found myself too often taking care of other people’s feelings about my breast cancer.
While I am 100% confident that all of these recommendations came from a good place, in the end they only created doubt. Doubt in myself for not "doing enough," doubt about my treatment plan, and doubt in my physician's recommendations. I spent countless hours and many, many nights going down the google rabbit hole, researching my “fate.” When I turned this over to God and had the website created to keep everyone informed and on the same page, I was able to let go and start the personal work needed to get through treatment. I liked that I could view the webpage any time day or night and see words of encouragement and not feel like I was failing my friends or family by not calling or texting back. It provided me the freedom I needed to process everything going on with myself and my family. I no longer had to report my story, but rather, I was able to create my story. I find it ironic that when I was diagnosed, strangers came out of the woodwork to help, and equally, people I had known my whole life, whom I considered close friends, up and disappeared. They didn’t know what to say. Their own fears drove them away. Though it hurt at the time, I was able to forgive their departures, and the unexpected bonus was being granted the clarity to see who my true tribe was.
The other AMAZING support I found came from the Young Survivors Portland. I was hesitant to attend for the longest time...quite stubborn about it actually! As an Aries and a critical care nurse at the time, I of course thought I did not need to talk about my experience with cancer with any more people. That is, until I did. No matter what type of support anyone has with their family, friends, church, etc., nothing is quite like the support you get from another young woman, or many of them in this case, who are walking the walk with you. It was life saving for me, and I would attend gatherings regularly and return to my own oncologist bouncing off new therapies, new information about my particular disease type, all the while learning how to best advocate for myself. I continue to be the best of friends with the girls I met during that time. We have lost too many among us, but the bond we share is like no other. Sisters is an understatement.
Now this might sound crazy, but ALL THINGS THAT CAME FROM CANCER WERE POSITIVE. I would NOT give cancer back. In a warped sense, CANCER became my friend. We had long talks. We made bets and deals, and I could laugh at it, and I am sure it was laughing back at me. We shared many hours in the treatment chair together, me with my guided imagery of droplets of chemo wearing white battle helmets, marching in for the kill wherever cancer cells were hiding. I told myself that if I felt this shitty, cancer had to be feeling worse. We were at war with each other, but CANCER changed the way I think about things. The way I love. The way I live. It taught me perspective and a sense of humility like I have never known before. And it brought amazing people into my life, people without whom I would not be here today.
And cancer also brought me my calling: I pursued a change in speciality and now have a job I love as an oncology nurse navigator, taking care of women and their families who are newly diagnosed. My own nurse navigator was instrumental in guiding me through the matrix of diagnosis through survivorship, so from the time of diagnosis on, I started looking for a nurse navigator position. Five years after my diagnosis, my mom was diagnosed. We were at her oncology appointment with the same medical oncologist I see. I told him I was interviewing for a nurse navigator position at Legacy and felt I might get the job. He told me the navigator for Compass Oncology had just put in her notice to move to another area. Within 6 days, I had 5 interviews lined up and was offered the position with the very same company I credit with saving my life. I was offered the nurse navigator position with Legacy on the same day, but there was no question in my mind which one I would take. I took over for the woman who helped me so many years prior, and now, I have a career in alignment with my passion, helping women who are diagnosed with breast cancer navigate their journey.
I plan to live every day to the last breath. Battle Cry Pink symbolizes a chapter for some, but a way of life for me. I had cancer, but it never had me. Battle Cry Pink covers a warrior. And warriors NEVER QUIT. I am so thankful to Handful for what they do for me, the community, and all of the strong, empowered women who are Handfuls out there. May we be them, may we raise them ❤