Monday, February 6, 2012

Week 22: Mama, Can You Hear Me?

Despite all going well on the Uterine Front, the double whammy this past week of the Komen/Planned Parenthood nonsense and news today of Susan Niebur's passing from inflammatory breast cancer has me reeling.

Kids being raised without parents due to illness -- particularly cancer -- always hits me at ground zero. You see, I lost my mother to metastasized colon cancer when I was 10 years old. She was 36. It was violent and ugly and unlike anything anyone should have to go through -- but anyone who has firsthand knowledge of cancer doesn't need to hear that. Regardless of physical or emotional pain, the hole left behind is immense. No amount of therapy (and I went through plenty, thank goodness -- it's the only reason I can function) or amazing family (and I have that, particularly my dad who is a hero beyond measure) or finding love or deciding to have a child will fill that space. It's just there. And it's gapingly unfair.

The beginning of this pregnancy was filled with doubt. I didn't have the usual recourse of asking my mom what she went through, or family medical issues. No one in the family remembered much (after all, Mom's last pregnancy was 36 years prior -- and it was the 70s, so women weren't as open about or aware of complications). There are so many holes when I talk to my midwife, genetic counselor, and other medical folks. We just don't know.

My mom won't be able to hold my hand in the delivery room -- just like she didn't get to see me become a Bat Mitzvah or a college graduate or a vice president or a bride. She can't show me how to swaddle a baby or calm down a fussy child or tell me how to gracefully handle and support a precocious kid who is too smart for his/her age. The echo chamber is real.

My kid will never get to meet his or her grandmother. Hell, I'll only be able to tell him or her the fuzzy remembrances of a small child, and so much of that is colored by pain and chemo and learning to clamp broviac ports and loss. I dread the day when my son or daughter will want to know more about Nana Stefani -- what do I say when I don't really know? How do a handful of faded pictures, an embroidered Passover matzah cover, a teeny-tiny Doobie Brothers t-shirt, and a few pieces of jewelry stand in for someone who would have deeply loved you, if not for a tumor?

In all of this, I am lucky. Lucky that I have the most compassionate, empathetic stepmother in the universe. As she's done since I was 13 years old, she's doing her damnedest to support me. She's the one I call with detailed doctor reports. She will hold my hand in the delivery room. She will be an incredible grandmother (even if she refuses to actually be called "Grandma" -- and she does. Too old sounding.). And she, through my baby brother, has given me one hell of a role model on how to be a fantastic mom. We both cry when we talk about my mom -- me, for what I can't have; her, for what she can't replace.

Life is a funny thing -- not a day goes by that I don't miss my mom (or, more to the point, the concept of having a mom), but I also can't imagine my world without my stepmom or my baby brother, who are easily two of the five most important people in the world to me. Don't ask me to choose. It's a "what if" I can't even consider.

And all of this? Aside from emptiness, I'm livid. Beyond angry that politics and money and grandstanding are higher priority than saving real lives and families. Cancer is complex, but the treatment standards aren't working. Compassion and support are truly lacking. And we're worrying about pink yogurt lids and pointless walks for "hope." Give me a break. Fuck your survivor ribbon nonsense. We are all AWARE. Give money to research and let's get on with it. We don't have time -- or lives -- to waste.

So do something. Do something real so that one more mother doesn't have to desert her children. Today, you can give money to The Inflammatory Breast Cancer Research Foundation in honor of Susan Niebur. Or to the American Head and Neck Society Foundation, so that no one else will have to go through the nonsense my beloved aunt is currently handling so she can meet her great-great niece or nephew. Or to Planned Parenthood, who are truly supporting women's health and saving lives through screening. Tomorrow, it may be another research foundation for another person whose time and luck ran out. Maybe that handful of cash gets one more person on the road to early treatment. Or provides funding for the breakthrough that allows us to kill these tumors once and for all. Or allows one more mother to meet her grandchildren.

All we can do is try.