3 Years Later – My MBC Story

It was a special weekend for me but he still called. It wasn’t just my birthday. It was also my bachelorette party. Within twenty-four hours, ten of my friends would be together in the mountains.

My sister was in the air flying to me when he called. When I was first given this terminal diagnosis. Up until this call I still had my hope. The doctor took that hope from me, temporarily, that night when he told me I had three years left. The doctor whose name I do not even remember told me he “would be surprised” if I was alive in twenty years. I still had hope before that nameless doctor called.

I know I still had hope because of a conversation I had with the interventional radiologist who corkscrewed a tool into my right hip bone while I bawled like a baby on my belly just days before. The biopsy had to be guided with a CT machine so I was on the CT table trying to stay still. The sweetest nurse was wiping the tears from my face as I cried because I could not move. I just laid there and cried in a puddle of my own tears. Just moments before this dark memory the interventional radiologist with a long braid came into the little curtain space where my husband and I were waiting for the biopsy. At this point, no one told me this was cancer. I did not know what a PET scan really even showed three years ago. I was told “something” showed up but no one even mentioned it was likely cancer. They just rushed me to the biopsy. He walked in and started chatting and all of a sudden he said something along the lines of him being 95% sure this was cancer. I said “What?!” and it was clear he thought I already knew.

I fucking broke. But I also knew it could be anything and a biopsy would tell us soon that it wasn’t cancer. It couldn’t be. I had shit to do right now. I was getting married. I was going to the mountains to celebrate my upcoming marriage with my ladies for my bachelorette party in just days. I was about to turn 28.

Denver, CO – Crying in the days leading up to my diagnosis.

Up until my phone rang two days later- February 22, 2018 around 7pm – I had a sliver of hope that it wasn’t cancer, but this radiologist really blew it. His words were followed by the words that came out of Dr. Nameless’s mouth. I exploded and melted into volcanic lava. Through all of this I could hear his turn signal because when Dr. Nameless called me on the eve of my 28th birthday, he was driving home to see his family or something. I didn’t ask where he was going because I was way too busy crying my fucking heart out of my eyes. He waited until the very end of his day to call me when I had asked him to wait until Monday. I cried from my heart. I hugged my dog and my husband held me. I remember the bedroom and the lighting and the way I cried. Dr. Nameless broke me. My husband and I cried so hard that night. Probably the hardest my family and I have cried collectively. 

I assume my dad cried when he hung up from our phone call. I know my sister cried on the second flight all alone after my dad called her on her layover while she was alone in the airport. She was jumping time zones to come and be with me for my birthday and bachelorette and now we were gifted this time to process this news together. About two hours later I picked my sister up at the airport in Denver. What a relief. 

Evergreen, CO – Sister Love.

You might be wondering why I would say “we were gifted this time to process this news together” but without her arriving this day, I don’t know if I would have made it through the next 24 hours period. And then my friends arrived the next day. This got me through the worst news I have received in my entire life. Keep your family close by. Family can be blood or those who you choose to be your family. Find your people and tell them how much you love them. Be there for them like you need them to be there for you. Spread the Love. Be the Love.

My sister was here for me when I had no idea I would need her like this. I remember the next day we went shopping at Costco to prepare for the bachelorette party. We needed food to feed the 10 people set to arrive in just hours. While we shopped I remember reading this article on her new iPhone. I didn’t know how to work the phone without the home button. I still don’t know how to work it without the button. The article was about metastatic breast cancer. I was reading it because I just wanted to know if I would be alive for much longer. I wanted the answers to so many questions:

– What’s going to happen to me? 

– Why is this happening? 

–  How much champagne do we need?

– I thought the cancer was gone?

– How did it come back?

– Do we have enough snacks? 

– What do I do now?

– Who was bringing the decorations again?

– How the fuck did I get here at 28 years old with metastatic breast cancer in a Costco on my birthday? 

Evergreen, CO – Running around topless in the snow.

This diagnosis and everything it did to me mentally was absolutely terrible. The feelings that come up. The impact that the doctor’s words would have on me were unknown still. The odd thing is that the days following the diagnosis that broke me were absolutely wonderful with the best people in my life by my side. We laughed and drank too much and smoked weed while soaking in the hot tub. We played on a tire swing. We went for a hike and we ran around topless in the snow and sunshine. I didn’t tell everyone the first day. I didn’t want to ruin their vacation like mine had just been bitch slapped. The news came out the second day in the mountains late at night after too much champagne and my ladies gave me so much love. 

I’m not surprised but it’s wild how in these moments the love and connection is all you need. The love that I received from my sister and my friends turned sisters was so special. We all cried. I know I did. The special part about this is that even though we didn’t know this diagnosis would come, my friends were all right here with me. It was literally all that I had right then and it was everything I never knew I needed. It was part of the plan the Universe had for me. I am so grateful I had them there to help me digest this information in the initial days. What better place to do so than in the mountains sipping on champagne & smoking a blunt?

Surround yourself with people you love and make sure they know how much they mean to you. Actions speak louder than words. They always have and they always will.

From that weekend on, I was crumbling. Through my 28th birthday and bachelorette party. Through my wedding and a not-so-honeymoon road trip home to the Cleveland Clinic. Through my treatment in Ohio. Through our wedding reception with friends and family and the removal of my ovaries just days later. 

I am pretty sure I kept crumbling until January of 2019, almost a year later, when I finally started to let go of the pain I had been holding onto for so long. I started to stand taller. I don’t know what the turning point really was but I do know that I made many lifestyle changes to try to promote healing from this terminal disease. I put the work in starting the day after we got back from my bachelorette party. 

 I changed my entire life including my mindset. I followed my heart and nothing else from 2/22/2018, the day I was told I had three years left. I started eating organic. I switched to a plant-based diet. I spent time with loved ones. I got married to the love of my life in the Rocky Mountains. I started doing the things I had always dreamed of because I didn’t know what my timeline would allow. I started to live in the present moment for the first time in my entire life. I fell in love with my body over this time and I was proud of all I have been through and the healing that it brought to me. 

Rocky Mountain NP, Estes Park – 3/27/2018 Love.

2018 was what some would call a year from hell. I agree but I could also find plenty of positives because that’s how my brain works after surviving cancer two times. My husband, dog and I moved 6 times between Colorado and Ohio in 2018. We always felt supported by our friends and family through all of this. The love from others is the only thing that fueled me on some of the toughest days. Cards are everything to me. When people send me cards it makes my day and it was one of the tiny details that got me through my treatments. 

Sending a card to a loved one is one of the sweetest gestures in my book. Send love notes to those you love!

Now I know that Dr. Nameless’s words were lies, but that doesn’t do anything to change the healing that I have had to do over the past three years because his words hurt me so deeply. His words had meaning and Dr. Nameless was too busy driving his car to pay attention to what he had said or done to me. He wasn’t even a breast cancer oncologist, so that was my first mistake. 

Never listen to someone who is not a specialist. Get a second or third or fourth opinion.

Yes, many people die quickly once their cancer spreads to other areas of their body. My cancer is now incurable and blah blah blah. I want YOU to hear this. 

You have a different story. You may not die in three years just because some older lady did after she was diagnosed. You might have decades ahead. I hope and believe that I do. I want to get hope tattooed on my body so I can never lose it again. Hope is yours to keep NO MATTER what anyone says or does to you.

Great Sand Dunes NP – The first stop on the way to Ohio after getting married in Estes Park

The thing that I lost that night for a short period was my hope. The words that this doctor used had so much meaning and I allowed them to resonate when they were not my words to hold onto. He said he would be surprised if I was alive in 20 years and I probably had about 3 years left. He said studies showed that women with this disease…blah blah blah. Women that had been studied with this disease, for the most part, were older women. I am not just a statistic. I am different from everyone else and I decided immediately that I could make changes that might affect my outcome. I hoped that I could, at least. Here I am 3 years later and I have no evidence of disease and just had another round of clean scans in early February.

Metastatic breast cancer is one of the least funded types of breast cancer research. If someone is diagnosed with cancer and it spreads to another area of their body then it has metastasized and they now have metastatic cancer. This is the case if both cancers have the same pathology. 

30% of women diagnosed with a lower stage will metastasize according to Metavivor. 

Metavivor is a nonprofit that raises money for research for metastatic breast cancer and I plan to do a fundraiser for them on social media for my birthday. The fundraiser will run from 2/20/21 to 2/26/21. I want to help save the lives of those battling this disease (INLCUDING MYSELF) because they are my family now. Any time I read about someone passing from metastatic breast cancer, I cry. I have never known any of them personally but it still breaks my heart. It makes me wonder how much time I have left to celebrate this gift of life. 

According to Metavivor, here is what money raised actually funds:

“Despite the dire facts surrounding the disease, for each $1 million spent on breast cancer research, only about $20,000 (2%)[13] goes toward metastatic research.  A number of leading metastasis researchers believe the stage IV patient situation could be significantly improved if the research were more fairly funded, but at 2% this will not happen.”

It breaks my heart every time I read about others struggling with this disease because I know it all too well. I removed my boob at 25. I removed my ovaries at 28. I radiated my right hip bone 3 times to zap cancer. I asked a doctor to cut a tumor out of my knee growing on a nerve that could have caused drop foot. This disease is dark and full of struggles mentally and physically. 

This disease has torn me to shreds more than once. This journey has not been easy and often these treatments are not fun in any way, even with a silver lining. I am changed in so many ways and I will never return to who I was. I can’t, even if I want to. But I don’t want to. Cancer has given me gifts that I never knew I wanted. With the pain and suffering I have regained my hope. 

My body has healed physically. My scars do not look so fresh anymore. My pain isn’t as intense most days. Some days are still bad but overall, I am stronger. My limp isn’t noticeable most days and I have been working with a therapist to manage my depression and anxiety. I do not care at all what others think and I live my life for myself. I follow my heart and listen to my gut feeling, also known as my intuition. I am a yoga teacher studying to be an herbalist who makes mala necklaces. I love sending cards to people. I miss traveling so much because it makes me feel so alive. My life has changed and I lost a lot but I gained so many intangible gifts. 

Estes Park, CO – We now live here 3 years later during a pandemic. We are so grateful for our time together.

I fear the disease returning but I won’t let that ruin my days. I want to share my story because it has been a challenge to overcome. I want to give others hope when they may have lost hold of it temporarily. I want you to know that you are not alone. I want to remind you that hope is yours and I want you to hold on to it tightly and never let it go. 

Hope is yours to cherish and keep close by. Do not let the statistics scare you like they did me. Trust your gut and do your best. More importantly, trust your care team. Get second opinions if your heart desires. 

I would love to hear from you! Please message me here or on instagram @mypaigeoftheworld. 

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