November 5, 2020 was my five year cancer-versary. I thought that it would feel like a huge celebration if I made it to that benchmark without a recurrence. I believed I would feel relieved. However, that is not how I experienced it at all. Celebrating is something I am not good at, in general. Everything changed on that day of diagnosis, and time can be marked from it: before cancer and after cancer. I have been working to unpack why making it to this goal did not feel more celebratory, and I am ready to share.
- Cancer is still a part of my everyday life.
There is not a day yet that goes by that I don’t think of it. First of all, it is a reality whenever I dress. Do I wear a breastform or knitted knocker, or do I go flat? What will I look like with each one of those choices? Am I even or imbalanced?
I often say to my husband, “I do not have a right breast.” He nods, as this is fact, but I am regularly still shocked by it. Luckily, my scar looks good, and I am so grateful for that, especially since I have seen some pictures of awful ones. Dr. Fox was a fabulous surgeon in every way, and I will always be grateful for the care she gave me. (Though I hope to never be her patient again!)
Herceptin, which was a part of my chemo regimen, damaged my heart. I will be on heart medications for the rest of my life. Thankfully, my current heart function is technically no longer in heart failure. I am able to recognize my symptoms right away, which are primarily fatigue and shortness of breath. My cardiologist was never too concerned, except for my family history. He retired, and now I need to find a new doctor. I have put it off because of the pandemic and symptom management. However, my oncologist wants me to see a cardiologist before I return to her in June.
I developed asthma after radiation. I have to use an inhaler twice a day, and carry a rescue inhaler. I know what triggers a reaction, which includes laughing really hard and the cold air. The others I can usually avoid.
Chemotherapy put me into menopause. I did not ever go back to “normal,” and now I am postmenopausal. Every evening I have hot flashes. It is such a fact of life, that my family is used to me suddenly sweating, peeling off layers of clothes, searching for a hair band to put up my hair, and fanning myself. I take medicine to control night sweats. My doctor said chemo-induced menopause is worse. Yay.
I take a lot of medicine every day. I get tired of managing my prescriptions. I literally have a shelf carved out in a kitchen cabinet for all of them. It is annoying.
I will take it until August 2026. That seems far away, even though that is only 65 more bottles. Technically, because I am post-menopausal, I could switch to an aromatase inhibitor. However, the side effects of it are no better. At least with Tam I know how my body responds to it even if I do not like it. The one that upsets me most is the bloated abdomen. Some days I literally look pregnant. I get asked how far along I am, and just please never ask anyone that question. It is hurtful. I also struggle with losing weight because of it, so I am still carrying the extra 25 pounds I gained during chemo. My oncologist said her breast cancer patients gain weight instead of losing, so I am still unhappy about that. It is frustrating to know that whether I work hard at diet or exercise, or eat whatever I want and be lazy, my weight does not change. I try to be healthy and get strong, and not weigh too often. My husband was in line at the pharmacy behind someone getting Tam. He said she was obviously older than me and had the bloat. I belong to enough Tam and survivor support groups to know my symptoms are not unusual.
After surgery, I did physical therapy to be able to move my right arm again. This had more to do with the sentinel node biopsy than the mastectomy. I am slowly regaining feeling under my arm, my side, along my scar. When the nerves begin to “wake up,” I feel very itchy, yet I am unable to scratch in a way that I can feel to satisfy the itch. Sometimes putting on deodorant is uncomfortable, because I am tender.
Last January I started a strength training class. My right arm is still so much weaker than my left, but I am slowly but surely working to make it stronger. Yoga has helped too, and it also helps with my balance, which is thrown off by my imbalanced chest.
The stages of grief – denial, anger, bargaining, depression, acceptance – are not linear (https://www.psycom.net/depression.central.grief.html). The grief is still close enough to the surface that I am aware of it. Sometimes I might go for a long stretch in the acceptance phase, only to return to being very sad and feeling deformed. It is only in the last few months that I have been able to give myself the time and space to intentionally grieve all the losses associated with my breast cancer. It is not something I can check off a to-do list; it may be a part of my process forever. There is plenty of emotional work that still needs to be done from the loss of my breast, the reality of my heart, menopause, and all the other changes in my body.
5. Other Survivors
My dear friend’s mom had a breast cancer recurrence after twenty years. She now has stage 4 metastatic breast cancer, and is enduring treatments. Her type of breast cancer is different than mine, but the fact that it could come back after so long makes me feel I will never be free. I know of others, like another friend’s mother-in-law who is living with stage 4 MBC and doing ok. I will always wonder if it has returned. I am vigilant about noticing changes in my body, and sometimes this is good, and sometimes scary, like when I found a growth on my scar a few years ago. Thankfully, it was just necrosis, dead scar tissue.
The only tests I have are bloodwork and annual mammogram. This is good, because scanxiety is a real thing. However, it always worries me that we will not catch it before it spreads.
I truly am grateful to continue to be cancer free. I am thankful for every good report, every time I finish another bottle of Tamoxifen. Every day is putting me further and further away from the time I was sick. Though it is a slower process than I would like, I am healing. I have made many strides, when I think back to where I was five years ago, or even last year. Maybe I put too much pressure on a date, rather than the daily gratitude of where I am.