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My cancer diagnosis taught me to speak up and ask, “What do I need to know?” and “What can I be doing for myself?”
My cancer journey was like a walk in the twilight zone. It was the summer of 2020 in the northeast, which was very shut down due to the COVID-19 pandemic. I was not permitted to have anyone with me for tests, results, visits. Everyone was masked and stressed. Luckily, I had 40 years' experience as a health care provider, so I thought I could streamline my experience. I called all my friends who worked in oncology, and they helped direct where I received my care. My hopes of a rapid process of diagnosis and treatment were quickly squashed.
I learned from my oncology team that although I had more than one breast lesion, my disease was considered “early,” and I could wait for my surgery until the backlog of more aggressive cancers were surgically addressed. Cancer surgery was considered to be elective, which blew my mind. Therefore, so many patients had to wait until hospitals opened beyond COVID-19 care.
It was nine weeks of hell waiting for my bilateral mastectomy and reconstruction. I continued to reach out to my team, colleagues, friends asking, “what can I be doing? Is there anything I can do, learn, buy?” Then I got busy. I sewed drain pockets into zip front hoodies. I made a mastectomy pillow and zip-front camisole. I researched all the helpful advice for recovery. I bought a lift recliner; I prepared freezer meals for my family for after surgery. I prayed that surgery alone would be enough.
Eventually, a nurse navigator gave me a folder and said, “some people find these programs helpful.” It was a comprehensive list of complimentary integrative programming available via Zoom. I dove headfirst into mindfulness and meditation, Qi Gong, Reiki, Jin Shin Jyutsu, nutrition classes and even a modified yoga class. It gave me a focus on health, not cancer. I felt empowered to tailor my journey and get the support for a healthier me after this nightmare was over.
My surgery and recovery were not straight forward. The abdominal muscles and vessels were not usable for the DIEP flap reconstruction as planned. Instead, they repaired the hernias they found and did a modified trans flap, which took 12 hours in the operating room. I had some wound healing issues and was self-referred to a wound clinic where I received amazing care and great advice for skin care and scar care. I also requested a referral to physical therapy, which was not considered routine and, in my mind, should be routine. The physical therapist was a lymphedema specialist, and she mostly did massage and laser to release some of the scar tissue and soften the tissue. I started me at home exercise routine with her help.
Being stuck at home during the pandemic after surgery had its benefits. No one was looking for me and I could rest and recover at my own pace.I continued a few of the complimentary programs and focused on gaining strength, mobility and overall health. A local nonprofit, Pathways, had a special program for women with cancer called Sisters Strong where I received 16 hours of one-on-one personal training with a certified oncology trainer which was pivotal in improving my overall strength.
Fortunately, I did not need chemotherapy or radiation. I have continued to use the self-help through the complimentary integrative programs, improved nutrition and exercise to get back to my life.
I wish I had known about these programs before cancer. Even learning about them in the early days of diagnosis would have given some relief from the stress of learning I had cancer. The most important thing I learned was that asking questions like, “What do I need to know?What can I be doing for myself” and self-advocacy are the signposts to recovery. In my opinion, everyone can benefit from plant-based nutrition, mindfulness, meditation, positive energy work and the self-awareness that comes from a daily practice.
This post was written and submitted by Kathleen Dempsey. The article reflects the views of Kathleen Dempsey and not of CURE®. This is also not supposed to be intended as medical advice.
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