I expected to test positive, but the news still felt emotional. Knowing for sure that my mom had the gene mutation, wishing we could have found out sooner, not knowing if it would have made any difference. The idea that I may have passed this on to Giles. My future babies.
Now I can get early screenings and do all the things I need to do. If I ever get cancer it will be diagnosed as early as possible, and that’s what saves lives (not any kind of “cure”). But I will always be waiting. I’ll get tested and tested and hopefully I will always be fine. But. But. But.
Next come the appointments. A High Risk Breast Clinic and the Dana Farber Li Fraumeni Clinic. Attempting breast self-exams while full of milk and tender. Mammograms. Breast MRIs. Other screenings. I’ve filled out my family history so many times already, can’t they just send it to each other? Faxing, scanning, calling. Holding a baby and talking on the phone: his gurgles and “ba ba ba” sounds in one ear, the nurses and receptionists in the other.
I’ll probably be fine. I am fine.
LFS mutant ninja turtles.
I’ll be posting more comics about this soon, but just to explain briefly what this is: TP53 is a gene that helps fight cancer. Having this particular mutation that runs in my family (which is also called Li Fraumeni Syndrome) means it’s easier to get cancer. It doesn’t mean I definitely will get it, it just means I have a higher chance than the average person.
I made this comic before having the test myself, so I didn’t know if I would have it or not. Rather than leave you in suspense until I finally have time to post the next few comics, I will just tell you now that I do have the gene mutation. This means my mom had it too, but they weren’t testing for it in 2011 when she had her genetic testing. I have lots of feelings, and will get into that more later. For now, I just wanted to get the ball rolling and start posting these new comics, and maybe write a little bit too about my experiences with all the testing, etc.
I know getting a mammogram doesn’t really mean I will get diagnosed with cancer. I know this. Getting mammograms regularly and doing self exams is how they would diagnose breast cancer early enough that my survival chances would be much better. And maybe I will never get cancer, that’s also a possibility.
I think I will always be waiting for that shoe to drop, in the back of my mind. Grasping on the edge of fear every time my breasts are squished between two glass plates, worrying that this mammogram might be The Mammogram. Every time I prod my breasts with my fingers in a circular pattern, dreading the possibility of A Lump.
I know that I am not guaranteed to get breast cancer.
I’m really scared that I will. That my body will betray me. That my son will sit with me at chemo, shave my head for me, make me radiation mix tapes, hear me vomit in the middle of the night and lie awake with the terrible knowledge that his mama might die. That he’ll have to live un-mothered too young.
I want to live to be really, really old, with Greg at my side reminding me where my glasses are, getting to watch our children grow up. I want to live at the beach. I want to LIVE. Live, live live. Grow to a ripe old age. Mother my children, love my husband, document and process my experiences through art, watch all the movies, eat all the popcorn, dance with my sister, howl at the moon, love it all.
I finished the cancer comic book. With the help of a really lovely woman named Kate Barber and the Publication Studio at the Williams College Museum of Art, it is printed and bound and is a real live book I can hold in my hands.
I want to cry. The intense joy of seeing the physical result of seven years of work plus the deep sadness of my mom not being here, not seeing this, and the sadness of everything we’ve gone through… seeing it and holding it I want to cry.
Reading the first part of this book, my mom’s part, is the only thing that makes me feel close to her right now. When other people tell me they dream about her or feel her presence I get mad, because I don’t feel it. It’s too much for me to feel it, or she just isn’t here, and I’m so mad, because she’s not here and she’ll never be here again.
But she’s in this book. At least, a part of her is. 2007 Viola is here, and I remember all these scenes. Reading her story in her own voice with her drawings and collages and handwriting is comforting and devastating at the same time.
We made this together. And I finally finished it.
Now that it’s a real live book, organized and formatted, I’m going to send copies out to publishers and hope it gets made into a book you can actually buy in stores, at comics festivals, and on the internet. I’ll let you know when that happens. (Incidentally, if you are a comics publisher reading this, feel free to contact me.)
I haven’t been posting as often this fall, as I’ve been so dang busy. Busy with good things– weddings, trips, work, projects. But I cherish the times sitting at my desk, looking out at the gorgeous glowing fall trees. Seriously, this year is the most beautiful autumn I have ever seen. Every day I am knocked out by tree after tree.
And we got kittens. Two deliciously adorable sisters, about 8 weeks old. Ever since Henry died, the idea of getting a new cat has been on my mind. Not because I want to replace him, he will never be replaced. When he died my heart broke, my heart that was already broken after losing my mom. Any tiny bit of it that felt slightly, delicately healed was ripped open again. The idea of a cat planted itself in my brain. I thought this cat would help me– through taking care of it I could heal my heart.
And it ended up being two tiny kittens who, in only three days, have already started healing my heart. I watch them interact with each other and this new world that is our apartment. Watch them play until they fall asleep, then wake up and play again. Hear them purr as I stroke their backs and tiny heads. I watch their distinct personalities bloom in front of my eyes, as Ingrid learns quickly to climb and jump gracefully, and Galactus cocks her head to the side and looks at me with her sweet concerned expression.
Somehow I am moving forward. I live in the same place I lived when my mom died, do many of the things we used to do together, go to many of the same places. I don’t want to move forward because that means getting further away from the time when my mom was alive. I’m pulled in both directions: forward and back. I don’t know how to keep living, how to get older and grow up and move on into the future of the whole rest of my life without my mom. But I know I have to. I found my wedding dress. My hair is growing out. I breathe, once in a while I manage to cry in front of other people. I take one small step at a time. And these kittens are little new lives, growing and learning every minute, and I’m helping them do that.
I’ve been working on this big cancer comic book, the first part of which is my mom’s cancer comic book she made seven years ago. On the second to last page she has written this quote from Paulo Coelho’s By the River Piedra I Sat Down and Wept:
“The moment we begin to seek love, love begins to seek us. And to save us.”
On the bottom of the next page, the last page, she has written a note in her quick cursive (handwriting that feels like home):
Ate: Nachos + Beer (I was very careful w/ the cheese) – chocolate – few nuts
Drank also champagne + pom juice
Hey all you locals– some of my stuff is now available at the School for Style in their new location at 20 Spring Street! Cat Cards, and several of my comics: Shelf Life (#1-3), Fish Dreams, and some mini cancer comics.
Anne Kennedy has done a lovely job with the store’s new location, and just as before, she breathes life and color into the community. Check out her awesome selection of vintage and handmade clothes, accessories, locally made jewelry, all kinds of great stuff. And while you’re there, take a look at my comics and cards!