Last night I found out that a Twitter friend of mine, Jada, had died of metastatic breast cancer at the age of 35.  I stared at my screen – stunned.  Although her Tweets had shown a decline and nothing but bad news for her, it still felt like a punch to the gut to hear of her death.

Jada is not the first #bcsm friend of mine to have died of breast cancer.   Jen Smith, who wrote the blog Living Legendary, died of metastatic breast cancer in 2013, leaving behind a young son Corbin.  In her interview with Lisa Bonchek Adams, another metastatic breast cancer blogger and advocate, Jen said:

I know society and the media have conditioned us to use the language “battle” against cancer, or in the “fight/war” against cancer. This is something that I’ve never really felt connected to. After all, what am I battling? A rogue cell in my own body, so in essence, I’m fighting myself. The best quote I’ve found that relates to how I feel is when Elizabeth Edwards died in 2010. Her friend said, “Elizabeth did not want people to say she lost her battle with cancer. The battle was about living a good life and that she won.”

The other frustrating thing I run in to is “So-and-so tried XYZ therapy and was stable for 10 years, why haven’t you done that one?” Then I explain that I tried XYZ and had progression in 3 months. I think getting people to truly understand that this is such an individualized disease is key. Just because XYZ works for one person doesn’t mean all people will respond the same way.

And, this is just me, personally, but I hate being referred to as “sick.” I’m not sick; I have a disease called metastatic breast cancer. If I was “sick” that would imply that I’m possibly contagious or that I’ll get better, neither of which are true.

When I hear about another death from metastatic breast cancer, not only do I feel sadness but I feel guilty.  Why them and not me?  What did I do that they didn’t do?  What did I have in my favor that they didn’t?  Survivor’s guilt, I believe is the term for this feeling.  Jada was 35, and I’m going to turn 34 in two months.   I followed her Twitter feed and often thought: This could have been me.

This still could be me.

You see, my guilt is not just confined to survivor’s guilt.  Maybe it’s my Catholic upbringing or the fact that breast cancer has brought out all the feeeeeels in me.  Perhaps both?

I have felt guilty that my two years of health issues have severely postponed plans to start a family (or realistically, completely cancelled them altogether).   The idea of having children with someone like me, someone who can go from healthy to incredibly ill with little to no warning, is enough for The Boyfriend to reconsider having a family.  The thought of raising a child or children by himself is too much.  (Yes, yes, I know – nobody’s future is guaranteed, and I have heard: “But you can get hit by a bus tomorrow,” but a tragic accident versus a prolonged illness are two different scenarios.)   The Boyfriend has every right to be scared, as his feelings are valid.

In his defense, I have wondered if I should have children and possibly leaving young children behind without a mother, too, like how I grew up.  I wish I could tell him that it’s going to be okay, and we’ll never ever have to deal with cancer again.  I can’t.  I don’t know that.

I have felt guilty that I no longer want to talk, interact or even be in the same room as my step-family, thus creating a lot of stress and pressure on my dad.  His life is centered around this family, and I accept that.  I just no longer want any of them in my life.  I did tell him that if he ever was sick and needed me, I’d be down there in a heartbeat, and I wouldn’t be a dick to the step-family.  I won’t be fake nice or phony.  I know that my refusal to see the step-family as my family will cause stress and tension in get togethers, but I chose my path and I intend to stay on it.  I don’t see any of the steps apologizing to me.

Going through breast cancer treatment made me re-establish priorities in my life, and when I realized that people who were supposed to be my “family,” didn’t care about me, I cut them out of my life.  If someone doesn’t care about what happens to me when I have cancer, I don’t care about them.

I have felt guilty that I am not the pink ribbon loving, platitude spewing and survivor banner carrying woman who has had breast cancer.  I’m not that woman, and I often wonder if my refusal to play in the pink party has made others uncomfortable or downright afraid of me.  Initially after I was done with active treatment, I briefly flirted with the identity as a pink ribbon breast cancer survivor.  After learning the truth and reality of breast cancer and the pink ribbon, I walked the other way.  Ran, even.   That’s not the type of person I want to be after cancer.

(I do not fault anyone who wants to embrace the pink ribbon and the survivor label.  If it brings you peace and comfort, let it continue to do so.)

I have felt guilty that I haven’t become the Forever Changed woman who has had cancer.  I didn’t completely overhaul my diet and lifestyle.  Some individuals have changed their entire lives, and I’ve probably made a fraction of the changes.  Sure, I have started running and have pretty much cut alcohol from my life.  However, I couldn’t tolerate Tamoxifen and stopped after six months because the side effects were too much.  Every time I have come into contact with someone who takes Tamoxifen and also lives a BPA, paraben, chemical, sugar free life, I am overcome with guilt, feeling weak-willed.  I wish I was strong enough to have tolerated Tamoxifen or changed every aspect of my life. I think about my inability to take Tamoxifen often, often wondering if I doomed myself.  Then I feel guilty that I can put my loved ones through this again because I wasn’t strong enough.

Whenever someone I have made a connection with because of breast cancer dies from this disease, my heart hurts.  Jada was a beautiful woman, and her death just goes to show how much more work needs to be done.

RIP, Jada.Walt Whitman (1819–1892). Leaves of Grass. 1900.

166. O Me! O Life!

O ME! O life!… of the questions of these recurring;
Of the endless trains of the faithless—of cities fill’d with the foolish;
Of myself forever reproaching myself, (for who more foolish than I, and who more faithless?)
Of eyes that vainly crave the light—of the objects mean—of the struggle ever renew’d;
Of the poor results of all—of the plodding and sordid crowds I see around me;
Of the empty and useless years of the rest—with the rest me intertwined;
The question, O me! so sad, recurring—What good amid these, O me, O life?

Answer.

That you are here—that life exists, and identity;
That the powerful play goes on, and you will contribute a verse.