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.

 

mammo versus breastfeeding

mammo-vs-breastfeeding-1mammo-vs-breastfeeding-2mammo-vs-breastfeeding-3

I know it’s my choice. To start weaning now and get the mammo and MRI as soon as possible (which will be about a year or so from now) or nurse Giles as long as he needs/wants and delay the screenings? I hadn’t realized how long it takes to wean a baby. It’s a slow, gradual process. If I start now it may take months until he is completely weaned. And it’s at that point that the nine month clock starts. So much waiting.

There’s emotions. And hormones. Breastfeeding is such a hormonal thing. At the very thought of stopping I start to cry, and I run over to Greg and Giles on the couch, where Giles is happily taking a bottle. I cuddle against them, my eyes big puddles of tears, Giles looks up at me.

And then there are moments when I feel ready, and know that everything will be fine.

Except everything isn’t fine. I’m afraid of what will happen to healthcare, to women’s healthcare specifically, to the idea of pre-existing conditions. I’m worried for my body, for my mind, for my future second pregnancy that will happen sometime during the Trump administration.

So many things to worry about– both big picture and very personal. I don’t really know what I’m going to do. But I am going to do things, one tiny thing at a time. Ask for help, seek out other moms who can reassure me or give me mother-led-weaning tips. Get back into some kind of therapy. Talk to my husband a LOT. Walk. Do yoga. Snuggle my baby. Cook something new. Buy local produce/meat/cheese. Get my son his first library card. Read to him. Dance with him. Sing. Draw. Write. Take a hot shower. Say “I love you” a lot. Keep my own medical records. Slowly shorten nursing sessions. Check my breasts for lumps. Call my doctors and ask questions. Pay attention to my body.

And after a lot of months, after a year, after an undetermined amount of time, get a mammogram and a breast MRI and get prescribed Lorazapam for these procedures to help calm me down.

 

i have a lot of feelings

feelings

Ever since being pregnant, and birthing a baby, and being a mom, there’s a lot of extra hormones raging around inside my body. I cry a lot. I’ve always cried– like at the movies or on the NYC Subway. But now I cry more, and from the faintest hint of any commercial involving babies (the first time Giles successfully put Cheerios in his mouth I cried retroactively at every Cheerios commercial I’ve ever seen). When we first brought Giles home I cried every evening at 5:00 sharp. For two months.

Sometimes I am crying about more than what it appears I am crying about.

Luckily, Greg often seems to understand exactly what it is I’m really upset about. Sometimes he doesn’t know, so he asks. Sometimes he puts a bowl of cereal in front of me because he knows I am actually just hungry.

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.

 

 

genes

tp53

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.