Who Am I?

After my first diagnosis, successful surgeries, and treatments in 2010 for stage III breast cancer, I thought I was cancer free, and considered and called myself a survivor.  A lot has changed since then, and how I think and feel about breast cancer has changed as well.

Having  a clean scan, mammogram, or MRI after a breast cancer diagnosis is a truly wonderful moment. Many woman and men will consider themselves cancer free, like I did, but I now believe saying  you are cancer free is not quite accurate.  I prefer the term NED. NED stands for “No Evidence of Disease”. You see, breast cancer can return at any time. It might return six months, six years or 26 years after your first diagnosis. I do not believe those of us with a diagnosis of breast cancer are ever truly free from it, there is just no evidence of it.

Unfortunately,  30%  of people diagnosed with the early stage disease will develop metastatic breast cancer. Metastasis occurs when cancer cells travel to vital organs. I became one of the 30% in 2013. I no longer considered myself a survivor. I am often asked, since I have no hair now, if I am a  survivor. Most recently I  was at a casino, and an attendant approached me, and asked that question. I said no, and explained my situation. She told me she was a breast cancer survivor, and that I would beat this. I had to explain to her metastatic breast cancer does not go away and I will be in treatment for the rest of my days. Even though this lovely woman had a breast cancer diagnosis of her own, she was not familiar with what happens when this disease metatstizes. This is not uncommon.

Not liking, or feeling comfortable being called a survivor, I wondered what I should call myself. Metster, lifer, thrivor, and survivor are some terms folks use to call themselves after receiving a diagnosis of metastatic breast cancer. Because my cancer does not define me, I am not very comfortable calling myself any of these. I am so much  more than someone who has cancer, but of course it does play a HUGE part in my life. I decided that I do not need a title to describe myself. Well, I can think of some, perhaps,  Queen of the Mermaids, but that is for another blog post. I am just someone who lives day to day enjoying life while living with metastatic breast cancer.

Having metastatic breast cancer has it’s ups and downs like any disease. Lately,  I have been feeling mostly well, but have been experiencing many side effects from the chemotherapy Taxol, and Neupogen shots. These include:

  • Watery eyes
  • Runny nose 
  • Bloody nose
  • Neurapathy
  • Rash
  • Bone pain
  • Weakness
  • Blurry vision
  • Diarrhea 
  • Stomach pain
  • Dry skin
  • Loss of taste

I was able to go off  Decadron, the steroid that is given with Taxol, for a couple of weeks, but experienced too many of the above side effects. I was put back on  it last  week. Being on a steroid comes with it’s own side effects. Not being able to sleep, being mean, and having a red face and chest are just a few.  Although I must say I look pretty good and healthy having the sunburned look.. As for being mean, I am known as Decadragon, a nickname my husband has given to me while I’m taking Decadron.  I regrettably have earned this nickname.

So far my white blood counts have been great, thanks to the Neupogen shots. My red blood counts continue to go down after each chemo infusion. I have had two blood transfusions since beginning on  

Taxol. I am so grateful to all those who donate blood. Thank you. I will be getting  my scans done in two weeks, and the results will show if this chemotherapy is working. I am thinking, YES! As always, thank you for your continued support.

  

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9 thoughts on “Who Am I?

  1. You don’t need a certain word to describe/define yourself, but I will personally always call you HERO…I don’t know that it will sit well with you, but I have seen what cancer does to someone, and when they respond to it with such grace, dignity and zest for life as you have, with little to no complaining, then, that word certainly holds true. We all see through different eyes, and you are the one living this, my friend! Just know how loved you are! ❤

    Liked by 1 person

  2. Thank you for your recent update today. You are one brave soul, and a precious mermaid…keep swimming. Thoughts and prayers are with you, and your family.

    Liked by 1 person

  3. I kinda like Decadragon – it’s cute! Lol

    You are my inspiration. When I’m having a bad pain day, I remind myself how cheerful and positive you are.

    Love ya!

    Liked by 1 person

  4. People are trying to be nice, but since they don’t understand the reality of a stage 4 diagnosis, they think they are helping by telling us we’ll be fine because we are survivors. Pinktober was born for women with stage 1 or 2 breast cancer because they are the ones who can show off how successful all that fundraising has been. In reality, we never really survive breast cancer, regardless of what stage we are at diagnosis. I was at stage 1 for almost 20 years. Did I consider myself a survivor? You bet I did – until I became one of the 30%!

    Like

  5. Susan,
    I’ve been trying to figure out how to respond to your post. You see, I do consider you a survivor, based upon the definition “a person who copes well with difficulties in their life.” However, I do not feel this is the only term that should be used to define you. Others I would use include mom, friend, mentor, wife, inspiration and beautiful!

    I love your photo – your inner and outer beauty illuminate your chemo room!

    I wish you peace and strength,

    Lisa

    Liked by 1 person

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