DizzyLotusBottom's Story: Giving Myself the Grace to Heal
DizzyLotusBottom is a Breastcancer.org Community member in Easton, Maryland, USA.
"Sometimes you just have to add a bow tie to your chicken hat and get on with your life as best you can."
My breast cancer journey has been a typical one. The only thing different is me. My journey truly began once treatment and surgery were over. I chose not to have chemotherapy (I am in no way endorsing this, it must be YOUR choice alone to make), so I never lost my hair although I do suffer from thinning hair and eyebrows. I did allow radiation therapy and adjuvant therapy.
One of the biggest takeaways is this: Advocate for yourself. Use the resources available to you. I was lucky enough the breast center I chose had a social worker dedicated to me and she was well-versed on how I could get answers to all of my questions. I did not feel a rapport with the first surgeon I met with. This person felt like I had somehow offended him by not choosing chemo before surgery, so I moved on to the next surgeon and this person was amazing! My choices were discussed, they were frank about not having chemo, but most importantly I was heard and my decision was respected.
I did butt heads a little with my oncologist regarding not accepting the most routinely prescribed adjuvant pill. I had researched for weeks and found clinical trial data that was valid, peer-to-peer reviewed and had been replicated to support another adjuvant pill that worked more effectively short- and long-term. It also did not require that I take it for as many years to gain the benefits of lessening the chance for a recurrence. I took the information I found and presented this to my oncologist, we discussed it and my choices were respected. I did suffer toxicity symptoms from two other adjuvant prescriptions along the way however; I've since been on a third with fewer side effects.
My point to all of this is: YOU have the right to pick and choose what YOU want for YOURSELF. You must also be aware of the potential outcomes of your choices, but don't be afraid to say no. While there is a standard of care for cancer treatment, YOU are NOT a standard of care. YOU are an INDIVIDUAL.
Post treatment has been the most difficult part of my journey thus far. Once everything settled down and resources moved on to someone starting their journey, I realized that I was still suffering. Both physically and emotionally. I was fatigued and my body was still experiencing painful post surgical/post radiation changes. My mind was not accepting the new way my body looked. I couldn't find the space to give myself the grace of healing and accepting who I was now vs. who I was pre-diagnosis. I didn't feel relief in the knowledge my biopsies all came back negative post-surgery. I didn't feel relief seeing the reduction and "perky" lift my breasts had undergone, in fact I felt like part of me died. I went into full-blown grief. There I was in my 50's mourning the fact that my breasts that had nurtured my children were gone. They were numb, sore, lumpy rocks sitting on my chest causing me pain. I had to listen to platitude after platitude from doctors and my personal support system. Each time I heard how grateful I should be, or how it must feel so great now that it was over, made me curl further into myself and feel how deeply this journey was solo. I refused to seek mental health services because I was burned out from all of the doctors and all of the appointments I endured for months and months.
My employer had been supportive, but I knew it was conditional because they acted like I should have returned 6 weeks later from medical leave the same as I was before I left. That wasn't physically possible as I was still experiencing discomfort — I had difficulty finding a bra that didn't sit on my incisions — and I was emotionally a different person. More withdrawn, not willing to talk about my experience and on top of everything else, I was feeling guilty about missing so much time from work.
So, we move on to the me I am today. I never sought mental health. Post COVID has made it difficult but not impossible to get help. As a result, I've suffered from insomnia, what I consider medical PTSD (I have nightmares about my surgery and the pain), anxiety and now I isolate myself to find peace. I still try to accept my body as it is now because I have no choice. This IS the new me. I'm giving myself the grace to heal. I'm searching my heart and soul for the cracks, and filling them as I find them, with love. The love of a woman, a warrior who fought for the right to continue to exist in this world and won. I allow the insomnia on nights I can't sleep longer than 4 hours, and I take naps instead. I don't look at time the same because it made me feel pressured into doing my pre-surgical routines i.e., get up, eat at certain times, sleep at certain times, etc. Now I do it for me as I need it.
Things may not seem normal to most, but they are to me. This is who I am in the here and now. I'm understanding myself in a profound new way. I'm seeing life differently and relationships differently. I'm no longer trying to please everyone, or allowing toxic positivity or toxic people into my life. I'm stronger emotionally in ways I never realized I should have been and needed to be. In the end, I showed up for MYSELF and I kicked ass, and I took names, and I moved on. I'll keep working through my mental healing just as I worked through my physical healing. I can cry, laugh, love — all of it. Or I can let it strip away the beautiful being I'm becoming. They are my choices to make and I choose to be freaking beautiful!! I need no ones permission, approval or acceptance to be me.
