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April 24, 2010

I feel desperate to write, to get some of this out of me and onto the page. Time has been so limited, juggling the babes and appointments and trying to figure out how to proceed with a treatment(s). It’s Saturday afternoon. The boys are napping. David is outside building another rock wall. I think I will always remember this period of our lives as the time of rock walls. It’s good I think. Protection. Definition. Boundaries. It helps David find some peace. Just him and the earth. Good strong physical work.

As I was walking from the car to the garage elevator at MGH on Friday I thought to myself: It’s amazing how quickly you can get used to something. Suddenly hospitals and tests and doctors have become my norm. I went to the MRI alone on Friday since it was simpler than dragging Leo and Sara along with me. And it was okay. Really. I’m even getting used to the IVs, though I still cringe when I think of needles and foreign metals invading my body.

We learned a lot last week. Finally, we had meetings with surgeons as well as the team from MGH for a second opinion. The little surgery I was expecting to have is anything but. This should come as no surprise. Each proposed aspect of the treatment plan has hit me like an avalanche. First the chemo, then the radiation with its accompanying long-term side effects such as not having a viable uterus or getting my eggs so fried I’d go into early menopause, and now the surgery. It seems that my tumor wins me a total meseorectal excision (TME) which means that I will have my rectum removed. The surgeon will reconstruct a rectum by pulling down my colon and joining it to the sphincter muscle. The surgeon at Lahey, Dr. Marcello, kept referring to himself as a plumber. I think he was trying to make me feel more comfortable. This is before he did a physical exam.

Speaking of physical exams, I’ve had an impressive number of fingers and cameras explore my rectum these last weeks. Dr. Marcello trumped them all. He actually took color photos of the tumor. He said patients like to have before and after photos so they can see the effects of treatment. Just 6 months ago, I was being sent home from the hospital with little black-and-white ultrasound photos of the baby, which we scanned and sent to our family. Am I supposed to tape the tumor to the fridge? Email it to my in-laws to share with their tennis and Scrabble friends in Florida?

I haven’t been able to nurse Leo for the last 24 hours. MGH warned me that the contrast agent used for the MRI is harmful to babies, though I was told conflicting information when I had the initial MRI at Mount Auburn. I decided to play it safe and wait 24 hours, but not the full 48 hours as recommended. The poor little bug definitely protested the nursing hiatus. Djana and Sage babysat Leo while I went for the test, and Djana managed to get about an ounce or two into Leo. When I came home he was all worked up. I know that my holding him was both a comfort and frustration: he could smell my milk, expected to be soothed at the breast as he has been every day of his life, and yet all I could offer him was a rubber nipple. Oh, he was mad.

Obviously, something like cancer affects not just the patient but everyone in the family. I keep thinking about Leo and how his first weeks and months of life will forever be interwoven by my healing crisis. It’s odd that he had to spend 2 days at Children’s when he was only 11 days old with the RSV and fever scare. And now this. This….

In the last 3 weeks, I’ve had to leave my baby in the care of so many others while I attend to the necessary medical tests and appointments. Sara, Djana, Ilana, Susan, Thea, Neige have all taken care of Leo for me. I think I’d be a wreck about leaving him if he were my first child, but having some experience as a mother makes it easier. It’s heartbreaking that I have to leave him while he’s so young—and for this reason—but it’s also been so beautiful to see the “village” of mamas care for him. This week Ilana took me to meet her Chinese herb teacher/acupuncturist in Western MA. Felicia met us there to provide childcare for Aidan so Ilana could hold Leo while I was in the appointment. Leo decided to wake up with a demanding cry for milk just as soon as I had needles put in. Ilana, who’s still nursing Aidan, offered to nurse Leo for me.

Watching my best friend nurse my baby, I realized that cancer has brought me into an entirely different reality. Game over. The life I’ve known, the fiercely independent, self-sufficient way I’ve gone about everything I’ve ever done is no longer possible at this moment. I simply cannot heal this cancer, or care for my family, without support. It’s humbling, terrifying, and beautiful all at the same time.

We’ve only shared news of my diagnosis with an intimate circle of family and friends. But that circle is naturally expanding as one friend tells another, and so forth. Already, I’ve been blown away at the genuine offers of support we’ve received. Like Neige. Neige and I know each other from the Dance community, but we don’t see each other or talk other outside of Dance Camp or the rare Dance Freedom I’ve attended since becoming a mama. And yet she showed up at our house with a beautiful bouquet of daffodils, bright red and yellow tulips, and mint from her garden and stayed with Leo (bouncing him up and down on the red exercise ball) for more than 3 hours while David and I met with doctors.

I’m so grateful for this love.

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