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“Get your affairs in order,” the oncologist told me as he looked up from his spinny stool. I was seated on the examining table, the crinkly white paper announcing my every move. I don’t know why I needed to be in a gown for this conversation — I wasn’t having an examination, the tests had already taken place. I was being told that I did, in fact, have metastatic breast cancer (MBC).

If you’re not familiar with MBC, it is the term used when cancer has left the spot where it started and traveled beyond the lymph nodes to other organs. I knew it wasn’t cancer in my breast that would kill me. Cancer taking over my vital organs would be the problem.

Metastatic cancer and stage IV mean the same thing, and you are taught early on to fear those terms. I had met with a surgeon prior to the oncologist, and he quoted all the statistics regarding the chance of survival for stages I, II, and III. When he got to stage IV, though, he just shook his head and told me those stats weren’t so good.

I learned then, when all I could think about was that guy shaking his head, that I was going to need to figure out how to control my thoughts rather than let them control me if I had a shot at seeing my daughter go to kindergarten. I was 26 when I was diagnosed, and she was only 14 months old, so it was a lofty goal far beyond what any statistic would predict. It was December 1998.

Thankfully, my brother found an oncologist who told me that cancer didn’t scare her and that she would help me kill it, and so I was off and running. Still terrified, but slightly, slightly hopeful. That same brother also told me that he learned from a professor in medical school that you can never predict which side of the statistical divide you will land on. That had a profound effect on me, and since all the talk was how could this possibly happen to you? I decided that I had a chance to be on the tiny-little shake-your-head side of the numbers.

“I was going to need to figure out how to control my thoughts rather than let them control me if I had a shot at seeing my daughter go to kindergarten.”

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So I became the slightly wild one. I began to call the shots. I started with the first nurse who began to list the location of my innumerable bone mets. “Stop,” I said. “If I know where they are, they will hurt.” I gave similar instructions to the staff wanting to list out the possible side effects from the chemo meds, telling them that they could tell my mom or husband, but I didn’t want to know what they were lest they manifest themselves.

I have been living that wild way for 23 years now. My family calls me a freak, but they tell me it’s meant in the nicest way. I do what I can to control the things that impact my thought process. I know that without my health, I have nothing. That’s true for all of us, but not everyone gets the mid-20s wake-up call that I did. I try to honor the women who haven’t had the longevity that I have by making memories with family and friends, and staying in the moment because life is about little things.

Over the years, there have been a million changes. While I initially went on disability to really focus on killing cancer, I have since returned to work. My husband and I adopted our son from India in 2002. My cancer has been stable since 2004, yet my medical chart has grown with issues from the many drugs and procedures over the years. I am still in treatment, luckily it is very easy for me to manage.

At times, it feels as though I straddle two different worlds, and I’m not sure I fully fit into either of them. For example, my friends are just now going through menopause, and my sympathy meter is zilch since the end of my reproductive years was medically induced in my 20s and took away the possibility of more biological children. 

On the flip side, my cancer peeps often deal with progression and sometimes die while leaving behind beautiful families, and that is hard to process. Just last week, I found myself at my job listening to people complain about something small. I wanted to stop them and say, “Hey, one of my cancer friends died last night, and this doesn’t matter!” Being an intermediary between the two worlds is not easy but gives me an important perspective. 

The chance to help others live fully with metastatic cancer is worth it. The ability to use my “good” health to advocate for them is worth it. We are the forgotten ones. The women no one wants to talk about, those of whom women with earlier-stage cancers are scared.

Metastatic breast cancer is not as pretty or pink as the world would like it to be. But if you are willing to listen to us, you might get some nuggets of wisdom garnered only when walking the precipice of life.

I am blessed. I am cursed. I am here.

I’ll take it.

Heather Jose calls herself a professional patient. Having lived with metastatic breast cancer for over 20 years, she has a wealth of experience that she loves to share. Heather is also an occupational therapist; therefore, she has the unique perspective of being both a patient and a provider. Heather enjoys writing, speaking, and positively impacting women with metastatic disease. Heather and her husband live in Michigan.