big truck

Photo on 12-4-16 at 5.20 PM #2.jpgPhoto on 4-19-17 at 12.50 PM #3.jpgPhoto on 4-19-17 at 12.50 PM #2.jpgPhoto on 5-3-17 at 12.01 PM #2.jpg

Photo on 12-11-17 at 4.41 PM #2.jpg

19 months and 6 days of mothering this human outside of the womb. The top picture is Christmas time last year, and the bottom picture is yesterday. He grows and grows, talks, walks, runs, laughs, makes jokes, dances, throws tantrums, squeals.

My life is so different from a year ago (and my hair is much longer)– mothering is so different now with this toddler than it was with the baby he used to be. My life is almost unrecognizable from what it was pre-motherhood. Though I do recognize something of myself from when I was a kid– long moments of playing, the joy of a car going down a slide, lying on the floor looking up at Christmas tree lights.

I’m still figuring out who I am in this role, though I think I’m pretty good at it. My heart has enough love, so much love, more than enough love– this I know.

I’ve gotten better at cutting his hair. Each time I do it more evenly, more like a real haircut. It’s similar to a 60s shag kind of style: like a Beatle, or Shaggy from Scooby-Doo. My sister says it looks like a bowl cut.

I’ve gotten better at confidence. At letting go.

He’s gotten better at sleeping. Eating. Expressing his needs and wants with some kind of language. He becomes himself more each day as he discovers new ways to be and do. He listens. He puts his hands on each side of my face and says, “Ohhh!”

My body has gotten better at being a body again. It will never be what it was before, and I have to accept that over and over.

One of my favorite conversations so far is this one:
ME: Giles, did you poop?
GILES: Poop!
ME: Is it a big one?
GILES: BIIIIG TWUUUCK!

To be fair, he says “big truck” as a response to lots of things. But I really think in this instance he was using it as a description for the giant turd in his diaper. My kid has a sense of comic timing like no other.

Today I am going to Dana-Farber in Boston for one of my every-six-months checkups. No scans today, but it is always a thing, a vibration under my skin, a whisper of will-they-tell-me-i-have-cancer. This doesn’t make me not want to go. Because if I wasn’t going to these appointments I would be worried every second that I had cancer and wasn’t doing anything about it. Now I get to know definitively twice a year that I do not have cancer, and I get to ask questions and talk out my anxieties with very smart and beautiful doctors. I like the car rides with Greg. I like the tacos. It’s a kind of date, and I will cherish it every time we go.

Giles will stay with Greg’s parents tonight, since we’ll be home late. When I see him in the morning, with his big smiling face (or even possible cranky crying face), I will squeeze him tightly. I will say “I love you I love you I love you.”

He’ll probably say, “Big TWUUUCK!”

 

 

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breast MRI

breast MRI

This is a sketchy diary comic of my experience getting my first breast MRI.

There was a small rectangular window where my face was pressed against the head rest; I could see my hair cascading down over the underside of the cot-thing I was laying on. That’s what is depicted in the first and last panels of this comic. Mostly I kept my eyes closed, listening to the loud clanking, and in between when there was silence Greg or the MRI tech talked to me. There were plugs in my ears, so their voices sounded muffled and far away.

The whole thing lasted about 45 minutes. It was fine. I will get one of these once a year for the rest of my life unless I am pregnant.

Sometimes all these medical appointments feel stressful and I wonder why I am doing them. But really, mostly, I feel good to be doing them. It’s the only thing I CAN do in the face of my odds of getting cancer (85% chance over my lifetime). Early screenings are REALLY important because if I do get cancer, it will be diagnosed as early as possible, while it is small and treatable.

“Treatable” is the operative word here, because there is no “cure.”

Even though there is no cure, catching cancer early means it hasn’t spread yet and they can take it out surgically, possibly not needing chemotherapy at all. It means living longer and better. It means being around for my kids as they grow up. A better chance of growing old with my husband. It means maybe not dying the way my mom did.

It is REALLY important that I have health insurance coverage for these early screenings. They are impossibly expensive without that coverage. What I have is technically a “pre-existing condition,” a genetic disorder that I was born with that has been in my family probably forever. It isn’t my fault, or anyone’s fault, that we have this.

I am very nervous about the new “healthcare” bill. I am scared of losing my coverage for these screenings. I’m scared of losing coverage for pregnancy and birth and women’s bodies in general.

I am scared of having to choose not to get medical care because it costs too much money.

I am scared for anyone having to make that choice.

 

 

march 10, 2017

dana farber 1

dana farber 2

dana farber 3

My appointment went really well, and I feel really good about the medical team I will be working with. We stayed with some of Greg’s family who live walking distance from the hospital. They watched Giles while Greg and I went to the appointment. The snow was falling so beautifully, and the day felt auspicious since it was the anniversary of Lee’s death.

I don’t have many photos of him. This is one of my favorites:

unnamed-1

It feels important to share photos of Lee. For the people who love him, so we can look at as many of his alive moments as possible. He was really here, he was a person, he wore khakis and a tie for the homecoming dance in 2003. He had a certain way of standing.

 

getting the call

tp53-2

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.