holley kitchen

We Need to do Better

Most readers of Get Up Swinging know that my number one priority to my breast cancer is more money for research for metastatic breast cancer. You know, I do it for my mom, who died at age of 40, only two months shy of her 41st birthday. I’ve also had breast cancer myself, and I live with the knowledge that my disease can have a metastatic recurrence any time for the rest of my life.

All of that’s true, but there’s more to why I do what I do.

For my friends who have metastatic breast cancer and young children, I know what it’s like to be that young child. I see the pictures they post, and when I see the early elementary school children, my heart breaks. I see myself in those faces. When you’re a kid, you know something sad and serious is happening but you can’t quite understand actually what is going on with the adults.

I read about my friends’ anguish about just wanting to see their children grow up. I think to myself, “These are the thoughts my mother had as she endured treatment after treatment with three children in elementary school.” I can understand their fear in a way because I am frightened of a recurrence and what is my greatest source of anxiety, is their day to day life.

I know what I’m about to write is going to scare the almighty shit out of my metser friends: I do not have any solid memories of her. I would describe them more like snippets of a dream I’m trying to remember but cannot with any certainty. Years ago, my dad played a recording of her and he had to tell me which voice was hers. I look like her and have the same disease, but I don’t remember her. She’s more a presence and not really a reality. I imagine this was something she feared and did not want to happen, but it did.

There’s a mom-sized hole in my heart that appeared when she died. It’ll never go away. I can fill it up with other sources of love and happiness but it’ll never quite fill the hole left behind by her death. It certainly shaped the person I am now, and I often find myself guided by the thought, “What would Mom would have done?” I also find asking myself when I’m blogging or sending out tweets advocating for change, “I wonder if she would be proud of me.”

When my friends pray for their current treatment to hold out for as long as possible, I think about my high school and college graduations, which she did not see. She did not even see me reach middle school. Those living with metastatic breast cancer want to see their milestones. Research into better treatments is the only way these moms and dads can see the milestones, big or small, happen. Metastatic cancer is smart and cunning, and it’s constantly thinking of ways to make it so the current line of treatment fails for the patient.

Holley Kitchen had a goal, which was to see her youngest son turn 5.  She missed her goal by two days.  Two young boys will be growing up without their mother, and that’s something I know all too well.  Please read Susanne’s blog because her perspective drives home the frustration.

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Credit: Metathriving.com

To my metser friends with children, please know that your children’s memories may fade to what mine are now, but know that they will never forget the love. I don’t remember my mom, but I know she loved me and my brothers more than anything. Your children will know that you did not go willingly and understand the ugly reality of cancer. Please please, do not avoid being in pictures with them if you can help it. You may think you look awful but your children will only see you. Trust me.

I know what it’s like to have cancer and live with the fear of recurrence. I also know what it’s like to grow up without your mother and have no solid memories of her. I would never wish either on my enemy.

That’s why we need to do better. Donate to Metavivor. Don’t buy pink ribbon products. Listen to those who have the most to lose because I promise you, they are the ones telling the truth, not the ones who want to sell tchotchkes.

MIA

For the last couple of months, I have been extremely busy with work, photography jobs and running.  During all that, I came across a lump in my abdomen which gave me pause.  I initially felt the lump in April when I was participating at Atlanta’s Ragnar Relay.  The small lump is located near my left ribs, and the very thought of a lump near my ribs worried me.  Still, I gave it a wait-and-see month period because the lump presented without any pain.

After a month went by, I decided to be a good little cancer patient and get the lump checked out.  When you’ve had cancer, you just can’t let unexplained lumps go unchecked.  Unfortunately, my beloved breast surgeon retired last year, which meant finding a new doctor to add to my doctor roster.  In a perfect world, my beloved breast surgeon would stay on forever and ever, but alas. You have to roll with the changes.

I ended up seeing a surgeon that looked to be my age or even younger, which threw me for a loop.  All of my surgeons have so far been old enough to my grandparents.  Grey’s Anatomy would lead you all to believe that all surgeons look like Patrick Dempsey or Katherine Heigl.  In my experience, all the surgeons I have had are more like an episode of Golden Girls (without the sass of Sophia, unfortunately).

The surgeon felt the lump and immediately told me that the lump was just a lipoma (i.e. a benign tumor of fatty tissue.).  Oh thank God.

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During that week of my appointment, I felt anxious and worried.  I also felt angry.  Why must my body keep forming unexplained lumps?  Is that my super power after all this radiation and chemotherapy?  More lumps and tests to see what my insides just formed now?  Why can’t my body flourish and create actual life, not just the occasional tumor?  I can run a dozen half marathons, but now and then, I’m reminded that life isn’t always fair and my health could possibly be taken from me.

I consider myself blessed and very lucky that this turned out to be nothing.  If the lipoma gets bigger and causes discomfort, then I can have it removed.  It’s been almost five years since my diagnosis, and I have continued to remain no evidence of disease.  I thank my lucky stars every day, and when the next scare comes along, I will deal with that one, too.

In the meantime, I want to focus on those who haven’t been as lucky as me.  Those with metastatic breast cancer need to be at the forefront of every conversation when it comes to breast cancer.  How can we help those living with stage 4 to keep their disease at bay and live years without any disease progression?   Every year, approximately 40,000 women (and men) die of this disease, and that needs to change.  Pink is not a cure, and 108 die every day.