Speaking out: Taking time for myself helped me get the care I need
I think it’s important to find your voice with anything, but I quickly found out how important it was to find your voice when facing breast cancer. The call came 3 months before my 30th birthday. The words hit me like a ton of bricks, “You have breast cancer”. Me? How? Why?
There was so much to process with surgery, a treatment plan, multiple appointment dates, and the biggest all, the diagnosis itself; it was overwhelming. I felt as if I was in a trance I couldn't wake up from.
Through a year of treatments, I focused on following the doctors’ orders without question. I never missed an appointment, and I paid attention to all the information provided to me, but still I couldn’t fully wrap my head around what was going on. I kept hearing, “We are here to help you get through this”, but I was unable to find any solace in that statement, no matter how many people said it to me. And there was still another diagnosis looming, that again I wasn’t prepared for.
Lymphedema wasn’t a part of the treatment plan we discussed. I was being the model patient, following what I was told by multiple doctors about my medications, diet, and mobility exercises. My left arm swelled and made it uncomfortable to go about my daily routines. Getting dressed, shopping for groceries, bathing, and even the garments I bought to control the lymphedema felt hot and uncomfortable.
The side effects of my post-cancer medicines, the hormonal therapy anastrozole and leuprolid (Lupron) weren’t a walk in the park either. I slowly started to realize how different I felt mentally and physically, how many times I was going to cry myself to sleep, or give up on planned activities due to pain and discomfort. I was not okay. I was sure the course I was on had to be altered.
As time went on keeping up with my class schedule, a job, running a small business, a once organized normal routine slowly became more difficult. I continued to be strong, forcing myself to keep pushing because I thought I could still do it all, but my body forced me to understand that I had to slow down.
I can recall so vividly one of the most traumatic experiences I had during treatment. My husband had already left for work, I was home alone and had hit the snooze button about 10 times already. I felt it was one of those days I’d need all the force in the world to help me get up for work. Instead of heeding the warning signs my body was providing I pushed. I passed out in the shower and again when I tried to get out to reach my phone and call someone. My injuries weren’t severe in comparison to the mental and emotional impact the experience had on me. I should have stopped everything. What I did was take time to sit with myself. I began to realize my core issue was trying to control every aspect of what was happening to predict my own outcome.
I took selfies during different stages while at the hospital only sharing when things were upbeat or more on the positive side. After the shower incident I felt compelled to be more open with my journey and share my story. Not long after that my mother was also diagnosed with breast cancer and it seemed more important to share my whole story.
Helping my mom and being an additional resource for her started to make me feel my struggles weren’t in vain and my experiences would serve a greater purpose. I started by opening up a little more on social media. What once felt uncomfortable soon turned into a positive release. I’m very selective about what I share on social media so this was a huge step. Sharing what I called “my truth” on a random day I could only hope would encourage someone else who might be having difficulties with something in their life. Additionally, I felt it was bringing awareness to my peers about breast cancer from my point of view. Learning to be more open gave me the strength I needed to figure out how to get a better handle on the out of control feeling I was experiencing in life. I began to realize that following the orders given by the medical professionals wasn't how I’d be able to get through the next few years, let alone the next few months.
I questioned why it was that I still felt I wasn’t being understood or heard when it came to what I was experiencing mentally and physically. How do I make my care team understand, something I haven’t been able to completely grasp myself? After having many bad days and leaving appointments in tears a couple years in, I knew something needed to change immediately.
It was time to Find My Voice!!! Suffering in what silence wasn’t the answer. I told myself to stop giving up, remember who you are, and speak up until you’re heard and issues are addressed. From that moment forward I never left another appointment in tears. I learned to stop fighting against what was happening and pay attention to what my body was trying to tell me. I devised a plan which included taking time off from work, eating food that not only tasted delicious but was fuel for the body, and telling my doctors specifically what I was feeling and experiencing on a day-to-day basis: uncontrollable hot flashes, night sweats, sore joints, mood swings, fatigue, and nausea just to name a few. Issues I had tried to shrug off, but that had been wearing me down for months.
Finding my voice drastically altered the path of my treatment by helping me gain back the control of my life I desperately needed. I have been nonstop advocating for my care and treatment. Today I can happily share that I've been able to better manage my lymphedema — the swelling in my left arm is down and so is the discomfort. After doing research I opted to move to a more herbal and holistic approach in some instances. My medical record is full of information that has helped my care team assess my issues and address them more quickly, giving me a better quality of life and, ultimately, strengthening the bond and communication with the individuals I entrusted to aid me back to a healthy life.
When the time came that I decided to stop the anastrozole and leuprolide treatments several months shy of the 5 year plan, my care team understood my reasons and that I was in a much better place to speak on what I felt was best for me moving forward. I found my voice and you can and will too!
LA Milam was diagnosed with stage II, hormone receptor-positive breast cancer in 2014. She is 35 years old and lives in Philadelphia.