METASTATIC BREAST CANCER: MY NEW NORMAL

When I was diagnosed with breast cancer in early 2015, I thought that was going to be the big challenge of my life. In fact, I often referred to my diagnosis as to a “bump in my road”. I believed that if I fought hard enough, I would have gotten over it and my life would have gone back to normal. Now I know I was wrong. That wasn’t the big obstacle of my life. It was just a test, a little pre-exam before the biggest storm that was yet to come and hit me like a ton of bricks. Neither was it a roadblock that I was supposed to overcome and keep following the same road rather than a detour that would never lead to the same path ever again. And lastly, now I know there isn’t such thing as going back to normal, if normal means living in a healthy body. Life with cancer is my new normal now and I’m learning to accept it.

My name is Romy and I have a metastatic breast cancer. This is my reality. (That’s how they always say it in the movies, right?:-) )

I knew it could have happened, I didn’t know it was coming

In May 2016 I victoriously celebrated being cancer free and having the weight of my shoulders. What a relief that was. For the rest of the year I was getting my life back, if there even is such thing after a trip to cancerland. I was cleaning the physical and emotional mess the illness left on my body and mind. And 2017 was like a gift to me because, for the entire time, I was under the (wrong) impression that I was still cancer free. Needless to say, that I will be forever grateful for that one extra care free year. There were still moments when the fear of reoccurrence hit me really hard and there wasn’t a day that the possibility of cancer coming back hadn’t crossed my mind. Especially because my type of cancer, triple negative, tends to spread a lot and the reoccurrence rate in the first 5 years is quite high. But I usually brushed those worries off because it had all just happened. In fact, I managed to find my silver lining in my illness and I trusted the universe on giving me a well-deserved break. “Not yet”, I would think when the dark thoughts came around.

Throughout 2017 my scans and regular check-ups were top notch, not a single problem occurred. That changed in January 2018 when a chest x-ray showed lesions in my right lung. I still wasn’t too worried because that side of my chest received over 30 radiations so it could have been any kind of damage. Few days later, while getting my ultrasound, my doctor was relaxed and chatty giving me “all clear” until she stopped and said she spotted something on my liver that needed to be checked immediately. I knew that look way too well from 2015, despite this being a different doctor.

In that moment my attitude had changed. I was no longer confident that this was all going to be okay. I was a mess and felt almost embarrassed of how much the possibility of recurrence and metastasis had brought me down. “Nothing has been confirmed yet!” I kept reinsuring myself, looking up all the possible things that the liver lesion could have been. There was still a tiny chance and a little bit of hope that it could have been something benign. From what I googled I had learnt that our organs can have heaps of weird little things in them and not every tumor means cancer. But somehow I already knew what it was, no matter how much I tried to stay positive.

My CT scan was scheduled for the following week and the waiting was the worst. I was physically sick, as if my body knew the results before my mind did. The anxiety attacks lasted for few days but then I somehow calmed down. I was browsing online discussions and on one of them I read a comment from a lady who was already diagnosed with mets. She was saying that we, those still waiting for results, should just enjoy little things in life because no matter what the scans would show, there is nothing we could do to change the outcome now. She ended her post with a quote: “Worry never robs tomorrow of its sorrow, it only saps today of its joy.” That really touched my heart and from that moment I was patient.

“But I do not have good news for you”

On Thursday, January 25th, I went to my oncologist office. I don’t know if doctors realize this but you can already tell so much from their faces, especially if they have known you for longer period of time. She did not seem happy. She looked me in the eyes and told me that unfortunately she did not have good news for me. “Liver mets?”, I asked. She nodded and confirmed that metastases had also been found in my lung and skeleton.

I don’t think I will ever be able to put this moment into words properly. “Of course”, I kept thinking. Similar to receiving my first diagnosis almost exactly 3 years ago I was looking around and kept thinking how perfect my life was just few moments ago and how amazing would it be to wake up right in that moment. There were voices in my head shouting “I can’t do this” and “But I have no choice”. Even the thought of “why me” crossed my mind this time. That’s something I have never, not even once, thought when I was diagnosed with my primary cancer. Because, well, why not me? People get all kinds of serious diseases every day and now it was just my turn. Unfortunate but true. This was the first time I have ever asked myself: “Why me?”

My doctor kept slowly talking about prognosis but I wasn’t really listening anymore. All my plans and dreams started vanishing in front of my eyes and everything else is a blur. I only remember feeling deep pain on my chest and I think that’s what an actual heartbreak must feel like. My cancer was back. That’s what was on my mind literally all the time for the next weeks. Later on I even started doubting if my cancer came back or if it was never actually gone. Somewhere I read the quote “Just because you got the monkey off your back doesn’t mean the circus left the town” and I guess that sums it up perfectly. Either way I was back to cancerland.  I was out of it and safe until suddenly … I wasn’t anymore. Now I belonged among those 30 % patients who experience reoccurrence in their lifetime and there was nothing I could do to avoid it because it had already happened. That sort of brought some peace to my mind even though it sounds sick and odd.

What came next was nothing short of overwhelming. Doctor’s appointments, lung biopsy, scans, blood tests, getting a part-a-catch under the skin of my chest, making decisions, dealing with reactions, applying for clinical trial, trying to process everything, visiting non-conventional doctors, starting ozone therapy, ordering supplements, changing lifestyle, preparing for treatment side effects, reading and doing my own research and mainly just trying to stay sane in the whirl of it all.

It is true that nothing is as hot as it’s cooked and luckily for me things did cool down since the diagnosis, at least for now. After all I started weekly chemotherapy treatment which is something I had promised myself I would never do again after going though it in 2015. Yep, never say never. In addition I am also participating in a clinical trial for a new cancer drug and do other things that have become part of my current treatment plan. But more on that in another post.

Stage 4: Voldemort of cancers

I’m not gonna go into details but trust me, I had big plans for the year. I remember last moments of 2017 when I was celebrating New Year’s with my friends in Prague. We were standing on the Charles Bridge, counting down the last seconds ‘til midnight and wishing each other the happiest of years. I kept thinking, or maybe even shouting out loud: “This year is ours! I have a feeling that this year is going to be epic!” But it seems like as soon as I said that, someone above laughed and my guardian angel fell into the river. I would have never guessed that in three weeks everything would be changed. That in three weeks I would learn that my cancer spread to other parts of my body. That in three weeks this “time of my life”-kind of year would become a year I would have to try to convince my body to stay a little longer again. But it had happened, I have already been dealt with these cards and now I have no other option than to play them.

With my first diagnosis it was all about sucking it up, going through “hell” and then getting back to normal. I knew I would probably have 8 chemo sessions, 30 – 40 radiations and two surgeries. It wasn’t easy but counting down the days until the end of the treatment helped a lot. This time I know nothing. Nobody does. I don’t know when the treatments end, if ever, how I will react to it and what changes, adjustments and decisions are yet to be made. It is frustrating to be tied up to a treatment and not to be in charge of my own life in some sense but I guess that is one of the lessons I had to learn – to lose control and trust that it is all going to be okay. And mainly to learn to live in the moment because, frankly, nobody knows when they are going to die. All we have is now.

Metastatic breast cancer is simply a different kind of game. It’s the cancer no one talks about. It’s the cancer that is so isolating because there is so little information and awareness about it. Maybe that’s because people, obviously, love sharing positive stories. They love pink ribbon marches and seeing survivors “winning the battles” (as if the ones who “lost” were losers!) but facing terminal disease is unlikely to bring a happy ending.

It’s been almost four months since the second diagnosis but honestly, as much as I do miss my old life and my old worries, it feels like an eternity has passed since. I guess our brain is capable of adjusting to some situations that we never thought we’d find ourselves, at least mine did, and I struggle to even remember what life was like before cancer in general, let alone before its last stage. I am still processing and learning to accept the fact that no matter how well the treatment goes I will never not have cancer. That’s a tough pill to swallow but now cancer is something I have to live with rather than fight it.

On the bright side I must admit that if these last months have been a rollercoaster ride I had as many highs as I had lows and life has still been pretty amazing. There were sacrifices I had to make and there are heavy days when the fear of future or reality of “this is not what a 27 year old should be going through (or any person for that matter)” hit me hard but most days I have nothing to complain about. I’m so darn lucky that my body is handling the side effects quite well and that every day I am able to do things I enjoy so much, I have so many reasons to smile and I am being surrounded by caring people. I am trying as hard as I can to live life to the fullest and to be anything else than a “sad story”….so far I think I’ve done a pretty good job. It might sound as a cliché but it all really is about finding the balance between those ups and downs. Now I have to enjoy the good days even more so the bad days pass quicker.

My new goal now is to prove that nobody can put an expiration date on a person and life does not have to end with cancer diagnosis. If anything, this is when life begins because that is when we truly realize how fragile it is. I don’t mean to sugar-coat this whole cancer shit show and as I said, I realize how lucky I am that my body has been allowing me to maintain “my life” for most days so far. But even though this was definitely not part of the plan, who knows, maybe this year still might be freaking epic, despite of the cancer being back.

Kudos if you made it all the way here. I wish I had some big piece of wisdom to share in the end but the truth is this is just a beginning and I am still looking for any kind of silver lining. So in a David Bowie spirit I will only say: “I don’t know where I’m going from here but I’m sure it won’t be boring.” 🙂

-Romy

 

9 Comments

  • Rissie May 15, 2018 at 3:57 am

    Much love and prayers!!

    Reply
  • Darinka May 15, 2018 at 1:15 pm

    Romanko naše <3 těším se na Tebe večer!

    Reply
  • Daniela May 15, 2018 at 8:44 pm

    Beautiful soul and woman! Love from Portugal. You’re big!!

    Reply
  • Martarita May 15, 2018 at 9:30 pm

    Speechless

    Reply
  • Mama May 17, 2018 at 11:13 am

    Na světě není lepší dcera než jsi Ty. Miluji Tě a obdivuji zároveň. Vím, že Ty to dáš.

    Reply
  • Elisa June 15, 2018 at 4:11 pm

    Thinking of you, love from Hong Kong

    Reply
  • Mara Vasconcelos July 9, 2018 at 10:26 pm

    You are an example for me and for everyone else!!!
    🙌🏻🙏🏻❤️

    Reply
  • art-pen.ru August 31, 2018 at 12:21 pm

    I was done with cancer. Chemo, check. Mastectomy, check. Reconstruction, check and check. I think people thought they were being helpful or hopeful as they told me that now it was time for my new normal. Secretly at first, then not so secretly as I wrote and talked about it, I hated that phrase. Not because I didn t want to get used to the physical and emotional changes that would likely stay with me forever, but because I hated the idea that the old normal was gone. Accepting a new normal seemed to me like admitting that cancer was stronger than me. I was adamant to carry on with my life without ever embracing that phrase, but now after three years, there are some things that seem so normal to me, I forget they re not normal to most people. It s like they re a different kind of normal for me. Perhaps even a

    Reply
  • Broken Crayon Warrior September 22, 2018 at 4:54 am

    Awesome post.

    Reply

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