Losing Trust In Your Medical Team

This post has taken me a while to configure, until a few months ago I was feeling so inspired, excited, and well. I am feeling vulnerable in putting myself out there in a way that is not rainbows and sunshine, it's been cloudy, now slightly overcast and I am finally seeing the sun’s rays peek through. I am all about sharing the truth and the “real story” behind a cancer diagnosis, so here goes. Those with a diagnosis know all too well, what it feels like to constantly worry and to strive for a life of contentment with yourself and the moment.

I am a 39-year-old, Momma of two boys 12 and 8, happily married 15 years, working full time and thriving on a new and improved version of myself since my diagnosis of Breast Cancer in November 2018. The first 12 months looked something like this:

  • 4 rounds of AC chemo

  • 4 rounds of Taxol chemo

  • Scans/tests/scans/tests

  • PICC line

  • BRCA2 positive

  • Double Mastectomy with Reconstruction

  • 25 rounds of radiation

  • Tamoxifen for 7.5 years

  • Oophorectomy

  • 18 months sick leave from work

2 years later and overall feeling well, I had returned to work for 6 months and was balancing life as best as possible in a pandemic. I felt I was well on my way to my wellness journey, I launched my blog breastcancerandbeyond on my 39th birthday and felt it was time for me to return the support and share some of the inspiration I was gifted when I was diagnosed and throughout active treatment.

A routine follow-up was booked in November 2020 and things were all normal, I asked all my questions and had no issues to report and thought I would be discharged. Nearing the end of my appointment my oncologist who I adore sat close to me and said there was something we needed to talk about. The dreaded words no cancer patient wants to hear.

I was all ears; I hadn’t had any scans/tests that he could be reporting on. Well, he said there was an amendment to your file after your double mastectomy and your pathology showed that your her2 status was positive and not negative, which changes your overall pathology to triple positive, which is a more aggressive cancer. Say what?!?!?!

Let’s backtrack if this hadn’t been missed 18 months ago I would have started on Herceptin a protein blocker, I would of received this by infusion every 3 weeks for a year. Triple positive breast cancer has a higher reoccurrence rate in the first 2 years. Say WHAT?!?!

I sat silent and numb.

In a matter of minutes, I returned to be a patient and felt all the patient feels. I have been here before; it took me back there and triggered all of the feels from 2 years previous.

I had no questions as you can imagine, my confidence in my medical team was slowly fading with every word. I have always felt I had the best of the best in care, this was hard.

We discussed the next steps which included several scans to ensure I didn’t have a reoccurrence and if all was clear I would be moving forward with receiving 17 infusions over the next 12 months.

The heavyweight of being a patient again was starting to come crashing down on me. I agreed to do what I had to do; I didn’t understand how something could have been missed.

Sigh… heartbroken, waiting for results, cue the what-ifs. Thankfully, I received the all-clear and was ready to proceed. Did I mention I would be heading back to the chemo room for this treatment? As I arrived for my first treatment, I couldn’t help but remember sitting there, waiting for my name to be called, the feel of the chair, the lights, the other patients, the beeping, the constant beeping. Add, that we are in a global pandemic and I was all alone. I must praise the nurses, these wonderful heavenly women who do their absolute best to make you feel comfortable. I will never know how to thank them.

I’ve had three treatments, including a porta cath insertion. I am doing well on the treatment, some mild side effects, and am being watched closely as it is hard on the heart muscle. Regular echocardiograms are done, and I may need to take a break if my heart needs one.

I know that life isn’t perfect, I have witnessed the unexpected and chose positivity when in doubt. Even though I felt I was well on my way with my wellness journey there is always room for improvements. Over the holidays I signed up for a 30-day yoga challenge. I am proud to be on day 29 and haven’t missed one yet. This has saved me, when I feel I can’t it reminds me I can and I am. Another hill to climb on my journey, one I am climbing slowly and carefully, ready to reach the top and pick up the pace and continue.

What I am thankful for is this reminder of how precious every day is and that I get a chance to re-discover myself. My likes, passions, and how I want to feel in my body. I am grateful my body has not given up on me and I am not about to give up on it.

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