Owning Your Decisions And Advocating For Yourself.

Updated: Jul 14, 2020

From diagnosis to starting chemotherapy was exactly 3 weeks. One evening I was trick or treating with my kids and the next morning I had cancer. From there my head was swirling, doctor visit after doctor visit, surgery, chemotherapy, radiation, hormone therapy, these words over and over and over. 3 weeks later I was sitting in the chemotherapy room with a picc line and as they called it the "red devil" was making its way through my body. I was on AC-T for 8 rounds, I had a lymph-node test positive and my healthcare team felt starting me on chemo first was best for my situation. ME, what did I know? Nothing. I felt pressure to get treatment started immediately, I couldn't think straight to research options and I was scared.

Chemotherapy made me feel that someone was watching out for my health, every two weeks I had blood work, saw my oncologist he measured my tumour and monitored my side effects. I also had a home nurse coming 3-4 times in the weeks in between, making me feel cared for and looked after when not at regular appointments. She also wore the most amazing socks, she dressed up in jewelry of necklaces matching her earrings and if there was a holiday within the next 30 days she was wearing christmas trees, hearts or bunnies. She was well-known in the homecare field and very experienced. I don't know how I would of done it without her and her suggestions, expertise and stories. Gosh, she loved to talk. Looking back, she knew me better then almost any of my other healthcare team. She was soon to retire and I am so sad that other women won't have her, her socks and her stories as part of their treatment. I am so thankful for all she did for me and my family. She never took me off her books, we continued to have regular appointments so when I needed her I was already a client. That is why she did what she did. Thanks nurse M.

I had 6 weeks between chemotherapy ending and my surgery date. I knew I wanted reconstruction or at least I think I did. I met early on with an amazing plastic surgeon who really just "got it". She understood the difficulties women and especially young women faced in losing their breasts, the physical and emotional side to a changing body. She was extremely supportive of either option, implants or DIEP (this is when they take your tummy and transplant it to create breasts). Her and I decided early on that DIEP was probably not ideal, recovery is much longer and my tummy skin was thicker then she would of liked for that surgery. She recommended implants and after learning more things to consider were it is almost always a second surgery, this could be an exchange if you require expanders during reconstruction, they are not always perfect and require fat grafting to "fix up" and they are not permanent, will need to be replaced in 10-15 years. Which I don't regret at all and feel of all treatment this is what truly what saved my life.

"So, there's the options what do YOU want to do?" asks the plastic surgeon.

The question, what do "I" want? This was the first time in my diagnosis and treatment I had to own a decision and choice. It weighed heavy on me thinking through and researching various implications of these procedures and now I was considering even nothing and going flat. Because maybe that was the "right" decision. Thinking about what I wanted and what I thought was right was an emotional roller coaster.

My oncologist knew I was thinking about implants, he wanted me to talk to the radiation oncologist about this as I would require radiation after surgery. Soooo.... there I sit in his office, he prints off documents of 10 plus doctors who have recommended not radiating implants and in his words "wouldn't you rather just go flat for a few months, then live a long life with your new breasts later on". He was not understanding the struggles of losing my femininity and the emotional side to losing your breasts, on top of losing your hair, gaining weight and a whole lot of fear. I understood he was focused on his job and that was radiation, he didn't quite even know all the facts about the various options of reconstruction, leaving me to try and explain. Of course the conversation ended with you need to do what you need to do and I left with the print outs and tears streaming down my face. I cried all the way home. I think I felt that I wanted to have implant reconstruction, but after both oncologists making me feel it wasn't the "right" decision I was beyond frustrated and scared to make the wrong decision. Who's body was it we were making this decision about? Oh yes, mine!

This was a choice I had to own, it was impacting my body, my mind and needed to be what I wanted. That's all. If I could of been more firm telling myself back then, I could of save alot of doubt, fear and tears.

Another appointment is set up with the plastic surgeon, discussing my doubts and the conversations I had with my oncologists. It felt like none of them talked, I wished they all were in the same room and we could figure this out. She could see I was struggling, she just so happened to have a patient in another room that recently had reconstruction to implants and asked if she would speak with me. It was a light bulb moment, this patient confirmed all the feelings I had and reassured me that I needed to do what I wanted. I am so thankful for my Doctor making this connection and allowing me to speak with someone who really "got it".

I made the decision to do skin sparing implant reconstruction. They would use my current skin and because I was having radiation would try their best to put them over the muscle and avoid expanders. No guarantees, as she didn't know exactly what things looked like until the surgery was happening. I had so much faith in this surgeon. She was amazing at what she did, I had seen many women who had implants done by her and I felt confident that this was "right" for me.

I can only explain the day of surgery in that it couldn't of gone any better. I was extremely calm while getting dressed and being marked up (yes they draw all over your body and my doctor forgot her phone so she asked my hubby to take the picture and send to her. I think he was living his very best life in that moment). As I walked into the OR, everyone was so friendly, lovely music was playing. My plastic surgeon hugged the anesthesiologist and they talked about how much they liked working together. My breast surgeon kept his hand on me as they prepped me and got me warm blankets. Then right before I closed my eyes a nurse popped over me and pulled off her mask and said "I will take very very good care of you". It was the "dream team". They updated my husband and parents regularly and everything went as planned.

I successfully had a double mastectomy with over the muscle skin sparing implant reconstruction with axillary lymph node dissection. They removed 11 lymphnodes, 3 testing positive in my post surgery pathology. The surgery was 7 hours, I stayed over one night and was sent home the next day after seeing my surgeon. I had 5 drains, I later named them my pouch babies. They lasted 2ish weeks by the time the last one was removed. Probably the worst of recovery were those.

Recovery was not that bad, I slept in a recliner for 3 plus weeks, felt like a t-rex with very little arm movement. This is where I share with you, never take for granted being able to put on your own underwear and all the little things we do each and everyday. I stayed on top of my meds, my husband slept on the couch for when I needed ANYTHING. I couldn't hug my boys as I was tender and my arms were very weak and had little movement. In 4 weeks with being committed to the exercises I was finally able to wrap my arms around my boys and I can still remember being in the kitchen and the first hug post-surgery! It was magical.

As I recovered I was gearing up for radiation. I had a follow up appointment with my plastic surgeon and that same day was seeing my radiation oncologist. I was nervous, I told her I hadn't seen him since he recommended I go flat. She looked at me, put her hand on my knee and said "You DO NOT have to justify your decisions to anyone". It was exactly what I needed to hear, I knew in my heart of hearts I did the right thing for me and it was not a decision I took lightly.

I walked in the radiation oncologists office, head held high, new breasts and all! We discussed moving forward with radiation and he never spoke about my decision and/or my why! He set me up for 25 rounds of radiation, less strength for a longer period of time. I am closely monitored for capsular contraction and am coming up on my one year which will drastically reduce my risk of that happening.

I am still adjusting to my new body, some days I still don't quite feel like myself. I am grateful for the options for reconstruction the positive impact it had on my overall well-being and mental health. I am really proud of myself for doing what I wanted, it is hard to advocate for yourself sometimes. But you will never regret making YOU and your needs a priority.

My advice is to take your time, things may seem like they are moving at lightening speed, however there is time to make the right decisions for you. Make one more appointment, follow up and speak to others who had similar surgeries. This will help you feel confident about your health and that yous can own the few decision and choices you get in your treatment.

Journal entry April 8, 2019 - day before surgery

Send me your positive vibes tomorrow as I go in for surgery first thing in the morning. I'm nervous and anxious but know this is another step closer to healing and health. Its been over 5 months and some days it feels like I barely blinked and am here. This is a journey, step by step and day by day.

I have an amazing surgical team and feel very confident in their care. They are focused on my future and that I have a long one. My family and friends have kept me going and got me this far. My boys and hubby remind me everyday what life is all about. I'm forever grateful for all of you and all that you've done.

I got this! XO A

Journal entry April 10, 2019 - day after surgery

Thank you for all the well wishes. Everything went as planned and both surgeons were very happy with how it all turned out. I will see them next week for follow up. I just got home and am comfortable so long as I stay on top of my pain meds. I'll be focused on resting and recovering.

My MRI showed major shrinkage and now it's all been removed. They planned to remove only some lymphnodes, however had to take them all. I'll have 5 drains in for the next 2 weeks as things heal. I have to say they are the most annoying part.

I'm so relieved that the surgery is successfully over and I can start to recover. Another chapter to this story. Xo A

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