My life is currently shaped by 3 major factors: I live on a small island in the northwest, I have 2 young children, and I am living with Inflammatory Breast Cancer. If you have never heard of it, that is because it is rare and often misdiagnosed. I had problems with my breast for several months, including a lump, redness, swelling, itchiness and pain, but I was pregnant, so we thought it was an infection. It took 2 biopsies and 2 consultations to get my diagnosis and I began treatment in the third trimester of my second pregnancy, with a 2 year old at home. Not the way I wanted to countdown to the birth of my second baby. In fact, the opposite of how I’d hoped to bring her into the world. As a cancer patient, that is. Coordinating my birth plan with my oncologist. Because, when you get cancer, your family gets cancer too, and every treatment decision was made with them in mind. As much as I wish I could’ve conquered my cancer with alternative therapies, I quickly surrendered to the treatments presented by the modern medical experts. It was too much at the time, but I wish I had asked more questions, read more books and blogs in the beginning, before I let myself just get swept up in it all. Maybe if I didn’t have a toddler and a baby, I could’ve handled it differently. Maybe if we didn’t live on an island there would’ve been more time and energy and options. But it was so difficult, on top of kids and cancer, to coordinate the ferry schedule with multiple appointments and overnight stays in the big city, like every couple weeks, for 11 months. I just didn’t have it in me to be the informed and critical advocate I thought I would be. Instead I just muddled through it and put my faith in the professionals. Sometimes the best you can do is just show up. Seriously, being a cancer patient feels like a full-time job, a selfish and crappy one. And with the opposite of benefits. Like parenthood, there are waves, dramatic ups and downs. Some parts get easier as you go, but there is a cumulative strain. Truly, it is hard work that is never done. An overview of my treatment below.
- Fall-winter 2015: After lots of diagnostics (2 biopsies, mammogram and ultrasound), 2 consultations and 2 different diagnosis, I began standard treatment for IBC/advanced hormone positive (ER/PR +, Her2 -) breast cancer. Two sets of chemotherapy drugs over 5 months. 4 dose-dense Adrimiacyn/Cytoxan infusions (and a baby between round 1 and 2) and 12 weekly Taxol infusions.
- Spring 2015: I had a single modified radical mastectomy, with a dozen lymph nodes removed. My tumor/cancer didn’t respond well to chemo and the surgeon removed a 9cm mass and a few cancerous LN.
- Summer-fall 2015: I had 30 radiation treatments, 5 days/week for 6 weeks along with daily oral chemotherapy Xeloda (because of residual disease after previous chemos) and began 4 months of hormone suppression therapy (Lupron shots).
- Winter 2016: Oophorectomy (ovaries and tubes removed) and began 5 years of Aromatase Inhibitor (AI) treatment, a daily pill called Arimidex.
It has been over a year since I was diagnosed, and despite being mostly recovered physically, I feel like I am just beginning to recover emotionally. I am not done with all this just because my hair has grown back and my wounds have healed. There are more and more moments I forget, but often it feels impossible to separate my disease from the rest of my life. That I have lost who I was pre-cancer. Sometimes I succeed in carrying on normally, but that usually requires extra effort and the distraction of my kids. Kids are hard work, but they certainly keep me in the moment. More often than not, I am living in moments, enjoying them when I can, and just trying to hold it together. I think this is the reality for so many others stuck in Cancerland, especially parents with young kids. I am still caught up in it. Like I don’t know what I am doing or where I fit now. Taking care of my daughters is a joyful and lovely experience, but it is also a struggle as I work through the lasting impacts of my time in Cancerland. We have all settled in here, but that almost makes it harder because I still don’t want to be here.
Although many parts of my many parts of my life have reverted back to pre-cancer days, I am forever changed. My time feels more precious and the stakes are much higher now. It is a daily battle to balance life with cancer and life without it, as I want to move on, but I can’t forget what I have been through. I don’t want to take anything for granted and my priorities and perspective have permanently shifted. There is a lot more that I can let go of now and just as much that I can’t. As I move away from serious treatment my anxiety builds and I search for other ways to keep my disease at bay. I am reminded of my difficult journey every time I get dressed or shower, and every morning I wake up stiff and sore. I am moody, forgetful, and fatigued, lacking patience, energy and focus. I still need help and it is not as easy to keep asking.No sense denying that every ache or pain now brings the fear of cancer returning even though I want to celebrate being “No Evidence of Disease” (NED). Just as no amount of positive thinking or healthy living kept me from getting cancer, it won’t keep it from killing me either. I want to live as long as possible, but when I die, it will not be because I didn’t fight hard enough. There is no winning this war, as the enemy lies within my own body. So I will keep living my life the best that I can. One day medicine won’t be able to kill off the cancer before it (or the treatment) kills me, and the next 4 years will be the greatest test of my long-term survival. I cling to hope that my journey through Cancerland will be over long after that.
*More information about Inflammatory Breast Cancer at www.theibcnetwork.org