I struggle with survivor's guilt because of this


Survivor's guilt is real. So is the divide in the breast cancer community.


This post is difficult to write. And yet, as soon as I read this article [Read: Only the weak die of Cancer] I was compelled to write down my thoughts. 

I am conflicted


The "us" vs. "them" divide within the breast cancer community is driving me out of my mind. And too often, into the bottom of a wine glass. I'm just keeping it real and honest.  In the years since I've been blogging about my journey with this disease, I've met a lot of wonderful metastatic patients and I've lost several friends to that disease. I've lost one aunt to breast cancer and another aunt just reached her 5 year mark after her second bout with breast cancer. I worry regularly when (or if) it will ever be my turn with stage IV breast cancer. I try to stay abreast of changes and gains in research and treatment regarding the disease.




But despite my concern about the disease and for the women I know affected, I feel that there is a strong divide within the breast cancer community between metastatic patients and the rest of us. And I am on the wrong side of the fence. Too often, when I read metastatic blogs or social media conversations, I feel that my experience with breast cancer isn't sufficient to warrant my admission to the conversation. I've tried to engage, but I finally accepted that it wasn't my party.

For the purpose of this post... "us" means those of us who survive breast cancer (for however long that may be) and "them" means those who are living with (or dying from) metastatic breast cancer. Depending on which side of the stage you're on, your us and them may be flipped. It doesn't matter. It is only for illustration purposes. In my mind, we are one group, millions deep.


I hate that we're so divided. 


I hate, hate, hate, hate, hate it. But I accept it because I understand feeling that some language or understanding isn't inclusive enough. I accept it in the spirit that I believe that everyone has the right to feel whatever they feel about their connection to breast cancer. 

In my mind, we're all SURVIVORS. 


All of us. From the day we find out that we have breast cancer, until the day we die -- and on into our forever -- once we have this disease, I look at all of us as survivors. We have gone through something so traumatic and life-altering that we are never the same. Our normal is forever changed. And each day is a fight of some kind... a fight to move on, a fight to regain ourselves or a fight to continue living and enjoying life with our friends and family. A fight for new therapies, new medications, new efforts that will provide another day, another year, another decade... we keep fighting.

I don't see a divide. But I believe that my metastatic sisters do. I love and respect them enough to respect that they feel different and left out because their prognosis is grim and there are still more unknowns than knowns about their fate.

None of it is fair. I don't pretend to fully understand how they feel. I don't pretend to have the answers. And I'm not going to ask them not to feel what they feel or to express what they feel. We all are walking our own paths with this thing. Their path is just as valid as mine.




Tweet: .@MyFabBoobies  Every person diagnosed with breast cancer has the right to their own truth about this disease.


But when I read posts like the one above which makes it plain that the language we use to buoy ourselves into our future, and campaigns like Komen's "Don't let breast cancer win", are bothersome and miss the mark for them, I cringe. I understand it... but I'm distressed by it too.

In full disclosure, I also participated in this campaign about life after cancer (non-compensated). I have participated in a blogging summit with Komen as well. 

The first few years after my diagnosis and treatment, I was really having a hard time not imagining a life without breast cancer in every breath I took. I had nightmares for years about my body being ravaged by cancer again. And I thought through a million scenarios about what I would do if I ever learned that I had breast cancer again. My oncologist tried to reassure me that I was fine and that I should get on with my life, get on with living... but I really couldn't. Not for a long time.

This disease had me in a chokehold for a long, long time. But, just as a good friend of mine (a 20-year survivor) told me in the early days of my treatment... as time went on, I found a way to live again. I have a zest for life now. I know that it is because I am considered to be in remission, but believe me when I tell you that, as a woman who has been clinically depressed... it feels good to look at the world and feel joy. I know that it is difficult to be happy about life when you're fighting for every day, every breath and undergoing treatments that make you sick in order to make you well.

Nic and other survivors at the 2009 Race for the Cure, DC
I was in my 9th month of treatment. In the midst of radiation therapy.  

 

I don't want my metastatic sisters to be angry or feel left out


I want to help, but I can't. I want to be happy for me and be supportive of them. Even though I think of them as my heroes and my sisters, I can't help but feel saddened that perhaps they don't see me and other survivors, in the same way.

I look at my metastatic sisters and my heart cries out for them. I want a cure for them. Just as I want a cure for myself. For my auntie. For my bestie. For all my friends who have been through this or may go through it. I speak out regularly about the fact that there is no cure for breast cancer yet. I question nearly everything that has a pink ribbon on it... to the point where I'm writing a second ebook about that topic. [I have a lot to say about pink ribbon marketing...,]

This is hard to share


I think that the acknowledgment of their path and their struggles is clearly not done enough. Simply not enough. I think the world needs to know that not everyone survives this disease and those lives matter just as much as ours do.

But I'm going to completely speak my own truth...

I cannot continue to feel like I have to be on hold, holding my breath because some twist of fate has me (currently) in a NED status. I no more asked for this, than I asked for the disease in the first place. No more than they asked to be stage IV, metastatic. We're all fighting. Our struggles are different, but we are all fighting. We're all warriors (in my mind) and we're all fighting.

My metastatic sisters are fighting for life. Fighting for more time to experience their families, follow their dreams, just exist. They are FIGHTING! And I stand up with them and love them, support them and rally behind them as they push forward with new therapies and new treatments. And even as they hold pharmaceuticals, the medical community, the research community, the non-profit community and even us early (or earlier) stage survivors to the fire to look harder for a cure, I stand with them. Let's be honest, a lot of people and organizations are getting really wealthy because of this disease... and women and men are dying every day. It has to stop.

Renee, Rene and Nic at the Komen Blogging Summit 2014

The survivor, warrior and fight analogies -- how I see them

The first time someone referred to me as a survivor, I winced. I was just getting started in chemotherapy and I felt nothing like a survivor. NOTHING. I felt fraudulent that someone would even say that to me. My thoughts were:


How can I be a survivor when I'm getting chemo right now? How can I be a survivor and I don't even know if they can stop this disease from killing me yet? Survivor? Me? You must be talking to someone else.

I wanted a new word that more accurately captured what I was feeling at that moment. Survivor really wasn't it. I hadn't survived anything. I had received some devastating news and I was afraid for my life. I was doing what I was told to do, and believing that I had put my faith in the right medical team at the right hospital. I was believing that God wasn't finished with me yet, while also praying repeatedly... Thy will be done. Thy will be done.

I was making peace with being ready to die and fighting to live -- at the same damn time.

So I do get it. At least I think I do. But hear me out.

When soldiers go to war, we don't say that the soldiers who die fighting are no longer soldiers. They are warriors the day they put on their uniform. Until the day they die, they are considered warriors. And after they die -- whether in battle or from old age -- they are still considered warriors; still considered soldiers. The title doesn't leave them, no matter what their state is.

That is how I view my metastatic sisters. Those who are currently fighting through treatment and those who have passed on. They never lost the fight. They've transitioned. They continue to inspire me and motivate me daily.

Final thoughts 

I love this dude. He loves me back.
And it gives me so much strength to be loved well. 
I can't tell another pink ribbon sister how to feel. It's not my place. But I will (finally) say openly that it breaks my heart to think that anyone feels slighted or put down by the image of survivors embracing living. Our battles may not be the same... that doesn't mean that they both don't equally matter.

This picture of my boyfriend and I expresses what brings me joy and gives me strength in my life after breast cancer. LOVE.

But I am not sitting in the seat where someone is telling me that there is nothing more that they know to do for me. So, I guess I have to acknowledge that that just isn't everyone's reality.

I had to make a choice. Accept that I was alive, for however long that may be, and find joy in each day that I open my eyes... or live as though I was dead already. Because my personal list of family, friends and acquaintances who have passed away with this disease is long, I felt that I would be doing them a disservice by not enjoying the life I had, while I had it.

In other words, I had to learn to accept what was and live in the moment. In this moment, I am alive. I have to be happy about my survival. Even if my language and the images of my joy bother other people.






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