This is living with Metastatic Breast Cancer…

I wish life was simple and that living with Metastatic Breast Cancer was a straight and narrow path, but unfortunately it is a rollercoaster of emotional distress and medical jargon. Essentially, you don’t get a break, and when you think you are in the clear and that you can finally breath, something happens to spiral your life out of control.

My last PET scan came back with a questionable spot on my right femur. My oncologist didn’t seem concerned, but requested an MRI just to be sure. Because of my bone disease they were concerned about an impending fracture. I have had a cyst in my femur for years. My right leg is the leg I broke when I was 2-years-old and it’s what started the whole saga with my bone disease, before there was even a name for it. The cyst was never an issue before, but they saw some “activity” (I really hate that word). I blamed all of the caution and concern on my Ollier’s disease. Right before Thanksgiving Richard and I were on high alert. We kept it to ourselves because we didn’t want to worry our family until we had more info. We thought no need to panic.. yet!

I read the results of my MRI on Friday, the day after Thanksgiving. I was in the car with my family when I got the email that my results were posted on MyChart (the patient portal). As I read the words “metastasis” I tried to hold back the tears as my husband, mother-in-law and kids sat in the car with me. We were on our way to have dinner with Richard’s grandparents in West Palm Beach. I tried so hard, but I couldn’t keep it together. I finally told Richard what I had read. We cried and tried to deal with the shock. We kept it to ourselves. Again, not wanting to alarm our family. I already had an appointment scheduled with my oncologist for that upcoming Monday. We decided not to freak out and to wait until my appointment to get more details about what it all meant. But that weekend for us was brutal.

Being who I am, I tried to stay positive. I felt as if the results were wrong. I thought the person reading my scans was not familiar with my bone disease and they were just overreacting. Because of my history with the bone metastasis they were just assuming the cancer was back. I prepared for both scenarios, but that Monday I walked into my Oncologist office completely convinced it was my bones acting up and not Cancer. Richard walked in preparing for the worse. I am glad he did so that this whole things wouldn’t hit him so hard. My oncologist wasn’t 100% sure what was going on. My tumor markers were low and my last scans were clear. So she ordered a biopsy. If you have never had a bone biopsy then you will never understand the level of pain you have to endure. They had to use a hammer to get into my bone. But I handled it like a trooper. My pain threshold is insane. I am still shocked at how I even deal with this stuff. Again, we kept this all quiet. For the last week we have played the waiting game. Waiting for the results of this biopsy was torture. I have replayed every scenario in my head. The good the bad. The what if? My hope was that all was fine. My gut told me it was nothing, but my mind kept telling me I was going to have to strap on my boxing gloves. 

Today, December 19, 2019 we got the news. The cancer is back! I never thought I would have to say those words! It was naive of me to think I could live the rest of my life without a reoccurrence. The reality of living with Metastatic Breast Cancer is starting to kick in. This is going to be my life. I will have highs and I will have lows. Sometimes the road will be steady and smooth and then we will hit every pothole imagineable. We are going to get fat tires and sometimes we will just burst into flames. I guess I was just so sure that the medications and all the treatments would keep working. I knew eventually I would have to try new meds, but I thought I had more time. I had two good years, and now we move on. 

I am still processing all of this and what it means. In the meantime, we are trying to focus on the good news, because in my mind there has to be a silver lining. The good news is that my onocologist already has a plan and has called in a few favors.  I already have an appointment with the Radiologist for Monday. We are going to zap this one spot, just like we did my spine. Another positive is that the Breast Cancer hasn’t changed. It’s still hormone positive. It hasn’t changed to Her2 negative or Triple Negative. That would require other treatments. My body built up a resistance to my current medication, which was a chemo pill called Ibrance. So now we have to find the right medication. This means a new pill, and no IV Chemo.  My Oncologist reassured me that there are options, we just have to find the right combo. My doctor also ordered a new blood test ( Guardant360- liquid biopsy). It will try to pinpoint certain characteristics in my blood and will help them determine which medication will work to keep the cancer at bay. I am not looking forward to the side effects of radiation, or the new medication. I pray that my body can tolerate everything and that it all works in my favor. I pray that I will be NED (No Evidence of Disease) again, and that I will have another 10+ years in the clear. I am trying to be realistic and I am taking it one day at a time. 

The pure rage I am feeling is REAL!! The disbelief that I have to go through this again is weighing heavy on my heart. The thought of Richard and my parents having to see me go through this again is killing me. We are NOT telling the boys. I am not going to ruin their Christmas or traumatize them. They are too young to understand what this all means. My boys deserve to have a great childhood not worrying about their mother. 

A part of me is feeling guilty for being so mad at God right now. I feel like it was such a tease to think that I was cured. There is NO cure for Metastatic Breast Cancer. I know I am not dying today, or tomorrow, but the thought of this fucking disease taking my life one day infuriates me. I feel like my faith is being tested again. But I will continue to trust God and to put my life in his hands. I will continue to control what I can. My doctor told me other than this I am healthy, so my body should be strong enough to handle what is to come. 2019 is ending with a bomb in my face, so I am praying that 2020 will bring some much needed healing and good news. This Green Chemo Ninja is back in action. 

Moral of the story; You don’t know what battles people are fighting, so be kind to one another. Life is too short for all the bullshit. Be grateful for what you have and stop being angry, that sucks all the life out of you. I only need positive vibes right now. I don’t want anyone’s pity and I am not sharing this to stir up anything. This is my life and I made a choice to be public with my diagnosis, so I have to keep it real. I don’t need anyone to have the right words to say. Sometimes being present and silent is enough. I just want to know that I am loved and thought of. I want to know that I am apart of your prayers. 

Richard and I are okay. We are ready to fight it out. But, if you feel the need to do something, then please donate to Cancer Reasearch. Donate to Metavivor or any other agency that focuses on research. I would love to see a cure in my lifetime.