Recently, CJ (Dian) Corneliussen-James, of Metavivor, wrote a letter to Fran Drisco of the National Breast Cancer Coalition.
CJ, in her letter, makes many points I agree with. We need to make sure that if we are talking about the end of breast cancer, our eggs are not all in the prevention basket. We need to make sure that stage iv patients are included. We don't just need prevention, we need treatment, life-prolonging and life-saving treatment. There are many woman living in the US alone with stage iv breast cancer. If our focus is solely on prevention, we are basically leaving them out in the cold, on their own.
I do not have stage iv breast cancer. I have not had stage iv breast cancer. I fully admit, I don't know what those with stage iv breast cancer feel like, or what they face. I can sometimes imagine parts of it. I still use my voice, as I have many times on this blog, on social media, when talking to friends, to advocate for stage iv breast cancer. I recognize that while I had breast cancer and someone with stage iv has breast cancer, our experiences, our treatments, our lives are different. (note: this extends to people who did have the same stage as me, or maybe were stage ii or stage i. We all have individual experiences).
I imagine at times, those with stage iv breast cancer must look at those of us who are NED (no evidence of disease) and feel jealous. And wonder why I am NED when s/he is not. I imagine that my complaints on twitter might seem trivial to my friend with incurable brain cancer. I imagine when I talk about a conversation with my daughter about if I were to die, that must seem easy to the mom who is about to enter hospice because all treatment for her breast cancer has stopped working.
I can imagine all of this. I can fully understand how one could feel this way.
I agree it's not fair. I often wonder why I got to be NED when so many really fantastic woman did not. I often wonder why I am alive and friends have died.
Which is why I speak up. I talk about stage iv breast cancer. I talk about funding research. I talk about not excluding those with metastatic breast cancer from October breast cancer awareness campaigns. I share facts with friends, strangers. I talk about these things in person, on-line, in this blog. I share blog posts written by metastatic patients so that other people can see things from that woman's perspective. I read the posts so I can learn too.
I am not perfect in this, but I do try.
I try to be a "fearless friend," (a phrased coined by Rachel Cheetham Moro - who passed away several years ago from breast cancer). I try very hard.
So when I was reading CJ's letter, and then I came to this part
Breast cancer is not the problem. You lose a breast, you have a medical year to endure and life goes back to normal. I know I will take flack for this statement … but hey … while I sympathize that some people spend many years thereafter in fear of metastasis, the simple truth is that their problems pale when compared with ours. I and every other metastatic patient out there would trade places with these former breast cancer patients in a heartbeat – their odds of survival are 70% … ours are 1-3% … that’s a huge difference in odds.
I kind of did a double take.
Wait. Did I just read this? Did she really say I just had to endure a year and then life goes back to normal? Is what I went through being trivialized?
I'd like to think that CJ did not mean to trivialize what I went through. I imagine there is a lot of frustration and anger for the lack of research into stage iv breast cancer, for all the times that stage iv breast cancer patients have been eliminated from the conversation. I believe she would trade places with me in a heartbeat. I don't doubt any of that.
But, um, can someone tell me where I sign up for my one year? Please?
|Me, on the 4 year canceriversary|
I get it. Four years is a gift really. Given that metastatic patients have a median life span of 26 months, my four years really is a gift.
But it wasn't a year of cancer, and then poof! All better. It was a year of cancer treatment. That led to infections. That led to lymphedema. That led to physical therapy. That led to menorrhagia. That led to low iron. That led to more surgery. That led to allergic reactions. That led to hospitalization. That led to thyroid goiters. That led to chronic fatigue. That led to migraines. That led to brain fog. That led to missed social events. That led to missed work. That led to missing things with my family. That led to new medicines. That led to new side effects. That led to, well, a lot of things.
It wasn't just a year. It's been a crapload of things that all seem to pile up. It's been days where I can't get out of bed. It's been days where I feel useless. It's been days where I feel like the worst mother ever.
And yes, it's been fear - fear that the cancer will come back. Fear that the pain I experience today will never leave. Fear that the side effects won't get better. Fear that I will never find normal.
These are my experiences and my fears.
I realize these are different fears and worries and issues that those with stage iv breast cancer are dealing with. I realize that the fact I'm still here, four years later, to deal with all of this is a gift in itself.
But it doesn't make my day-to-day life any less painful. It doesn't make the migraines hurt less. It doesn't make the joint pain disappear. It doesn't make another basketball game I have to miss magically get canceled and rescheduled for when I'm feeling better.
I will continue to be a fearless friend. I will speak up about metastatic breast cancer. I will continue to push for awareness and education. I will continue to push for more funds into research. I will keep doing this.
But don't let that fool anyone. I still have difficult days. And hard days. I won't trivialize any one's cancer experience. I will continue to be a voice of advocacy and love and understanding. Because I believe that this is the best path to continue down.