My first surgery: I now have a port

I felt quite fragile today. Weepy at times like I haven’t been/felt since that first week of diagnosis-haze. The day started with me keeping my cool but with Harrison’s continued negativity and contrarian attitude weighing on me. I’m trying to be compassionate, trying to giving him the benefit of the doubt, though I do wonder whether he’d be acting this way regardless of the circumstances—is this what a 3rd grader looks like? It was a heavy walk to school, with him several feet ahead and “very upset” with me once again, this time because I said I wanted him to notice how much he’s been focusing on and talking about “the bad stuff” lately and rarely “the good.”

I felt my first watery eyes in weeks after dropping him and Sophie at school and walking back in the beautiful, gray drizzle.

“Maybe it’s just because of Harrison, wanting things to be easier with him,” I thought. But then insurance battles and more teary eyes, and the chemo information session during which, among other things, I registered for the first time that I would also be losiImageng my eyebrows and eyelashes. And then Annie, my godmother, drove me to the place where I was getting the port put in, and sitting in the waiting room, all I wanted to do was cry. But instead, I kept holding it together, holding it together, not wanting to let my guard down so completely.

I didn’t feel anything during the procedure. I came out groggy, exhausted, feeling fragile and embracing my fragility more publically. Moving slowly. Quietly. Gently.

I’m quite sore. And quite vulnerable. And quite wonderfully safe-feeling in my bed now, where I’ve spent most of the late afternoon and evening, except for going downstairs to eat. We had a lovely “Chanukah” dinner, for which I am very grateful (Chanukah in quotes because it is weeks before Chanukah, but we always celebrate it when Annie comes to visit this time of year).

I’m also grateful for the time spent reading to Sophie in my bed, and especially grateful for the time spent with Harrison, when he crawled into my bed a bit before 9pm and I didn’t turn him away. We snuggled and talked and I let him fall asleep next to me. A gift a gift a gift that makes everything feel better.

Here we go. Tomorrow: Chemo.

Moving forward: Finally starting treatment!

Today I finally got all the necessary appointments in place to start chemo on Tuesday. I feel such relief at FINALLY having a plan and finally moving forward with it.

I also got the call today that I am BRCA negative. Sigh of relief—for me and for my children.

With the frenzy of doctor’s appointments over the past few several weeks, and the uncertainty about my test results and treatment plan and schedule, I have been literally unable to see or plan past a couple of days out. My friend Nuni wisely said that perhaps it was a good opportunity to live in the present. True. And yet, the uncertainty has caused a level of anxiety that I hope settles now that I will (hopefully) have a more predictable schedule and routine (never mind that the schedule and routine will include chemotherapy and sickness). Striking how much I crave predictability, as it turns out.

IMG_4914With the frenzy of the last weeks, I have also been frenzied with Harrison and Sophie. Today I made a commitment to myself to focus on the positive with them. To take a breath before I let my own stress come out on them with nagging criticism. To instead name the plethora of WONDERFULS about each of them. ESPECIALLY now, that’s what I want them to have from their Mama.

A Good Diagnosis (or: Why I really have to be okay now)

I spent the ten days after my cancer diagnosis driving to doctors’ offices, arguing with insurance companies, undergoing various body scans, and trying not to think about—or at least to not latch onto—worst case scenarios. Am I going to lose both breasts and my ovaries, too, and pass along a cancer gene to Sophie and Harrison? Does that pain in my stomach mean it’s spread? Worst scenario of all: Will my babies grow up without a mother?

When Josh and I met with the oncologist for the second time, ten days after my initial diagnosis, and she told us that the MRI and CAT scans showed no signs of metastasis, I gripped Josh’s thigh and teared up for the first time in a week. I was going to live. I was going to live! (Or at least I wasn’t going to die any week now of cancer.)

I wasn’t planning to say anything to the kids, but when we got home, it slipped out. I told them that we had just gotten good news from the doctor. Harrison stopped in his tracks to ask what. (Rare that he hears me the first time I say something. Rarer still that he actually responds right away. But he literally stopped in his tracks.)IMG_4923

“I still have breast cancer,” I said, “but the doctor says I’m going to be okay.”

Harrison ran over with a big smile and a big hug and such big relief in his nine-year-old body that I wanted to scoop him up and never-ever-ever let go.

Now I really have to be okay.

How My 9-Year-Old Is Dealing with My Breast Cancer

I was really looking forward to snuggling with Harrison tonight. Was hopeful that he might open up to me during that quiet alone time as he sometimes does at night. But when I told him it was time to put his reading away, he turned angry and rude. Perhaps he would have anyway, but these days, it’s hard not to think that any emotional outburst is because my babies are carrying around the fact that their mother has breast cancer.

After we both cooled off, I went back into his room and told him that sometimes feelings about my breast cancer might come out in other ways. I asked if there was anything he wanted to say or ask. When he said no, I said I would be checking in with him on occasion and he said with frustration, “I don’t want you to keep bringing it up, that’s too much pressure!” I wanted to shout and to hold him close, all at the same time. Instead, I simply said that I wouldn’t bring it up a lot, but it was important that he didn’t keep everything inside, and so I would be checking in with him now and again.

Harrison’s (also wonderful) teacher approached him at school on Tuesday, just to tell him that she knew, and that she was thinking about him and his family, and that he could talk with her anytime if he wanted.

Then on Saturday, Maggie and Barry (our closest of friends and Harrison’s godparents) took him out for their annual birthday lunch tradition, and when they brought up the topic, he said, “Everyone keeps bringing it up, my mom, Ms. Gerould, Amma!” But when Maggie shared that as a kid, she wrote things on a slip of paper and put it under her mom’s pillow, Harrison said that sounded like a good idea. (When Barry said they could get him a notebook, he said, “But I could just use paper, we have a lot of that around.” Smile. How very practical of him.)

What a slippery line, trying to give my son space without giving him too much; trying to acknowledge his feelings without projecting my own onto him.

What a strange reality, having to deal with any of this at all.

How My 6-Year-Old Is Dealing with My Breast Cancer

Sophie has continued to bring up my breast cancer herself, asking questions and sharing feelings. She and I had alone time on Tuesday and without prompting, she shared that she got to sit next to Ms. Brown on the school bus on the way home from their field trip, and that she asked Ms. Brown whether she got my note about (and here she whispered) my breast cancer.

In the same conversation, she asked, “But why don’t people know how people get breast cancer?” (Amma said that at breakfast, she asked how people get cancer.) Also, “Do kids get breast cancer?” and “How do men get it if they don’t have breasts?”

Then a few nights later, after Sophie asked me to sit with her in the bathroom, she asked if she could tell her friends that her mom has breast cancer. I told her she could tell anyone she wanted. (Later that night, I worried that it might not be appropriate for her to announce this news to other 1st graders, but I spoke with her (wonderful) teacher who said Sophie could say whatever she needed to say.)

Still in the bathroom, Sophie then said, “I’m worrying but I don’t know why.”

I didn’t want to make assumptions so I asked, “What are you worrying about?“

“I’m worried about the breast cancer, but I don’t know why.”

Of course you’re worried, Love. But I really do plan to be fine,” I said, hugging her close, squeezing her hands, stroking her cheeks, kissing her forehead, wanting to make all of this go away for her, for Harrison.

(Here are more tips for talking with kids about cancer.)

Telling the Kids

Even though it will be a couple of weeks before we have a clearer diagnosis and prognosis, I didn’t want to wait to tell my children that I’d been diagnosed with breast cancer. Already the news is spreading amongst our close friends, and we have the good fortune of being part of a very close and very social community. The kids of my close friends are my kid’s close friends. Rarely does a week go by when we don’t have dinner with another family or two, or a playdate for our children, or a casual, drop-in visit. And rarely does a week go by when you won’t find several of us parents sitting around a kitchen table or living room floor, chatting about all the things going on in our lives while our combined brood roams and plays in and out of our laps, our conversations rarely far from their earshot. Bottom line: I didn’t want to take the chance that my children would overhear “Jenny” and “breast cancer” in the same sentence from anyone other than me.

So last week (just two days after I was diagnosed), my mom, Josh, and I told the kids we had something important to talk about. The grown-ups prepped ahead of time. I said I wanted to do most of the talking. We agreed to say as little as possible, let them ask if/when they wanted to know or simply talk more; and to keep the language as positive – but also as honest – as possible.

Harrison (my nine-year old) was deep into his legos and Sophie (my six-year-old) was playing alongside him when we called them into the living room. With all of us settled on the blue couch, I hesitated a bit, stumbling to get started before telling them that we found out this week that I have breast cancer. That we have a lot of doctors and friends and family who will be supporting us and that I plan to get better. I don’t remember saying all that much else, other than a couple of smaller points: that I would be going to a lot of appointments, so other people would be taking them to school and picking them up at times. That I was going to write their teachers, so they would know what was going on.

IMG_4965Harrison lay his head in my mom’s lap before the conversation started and was almost silent the entire time. Sophie wiggled between Josh and me and put me at ease with her many questions, let me know she wasn’t going to keep her feelings and concerns inside.

It seemed like Harrison wanted to be done with it all, and I told him he could go back to his legos if he wanted, but he stayed put for a bit longer. Sophie asked why it was called breast cancer, and I said because it was in my breast.

After a couple of other questions from Sophie (“Why are you telling our teachers?” “Will you give Ms. Brown a note on Monday?”) she asked again, “But why is it called breast cancer?” Again I said because it’s in my breast. When she asked a third time, I finally got that she was asking me something more.

“Are you wondering about that word, ‘cancer’?” I asked.

“Yeah,” she said. “I think I’ve heard it before.”

And then Harrison spoke for the first time. “That’s what Ran-Ran had.” In other words, that’s why his other grandmother died (ovarian cancer). So he had been chewing on that in silence for several minutes. Oh my aching heart.

I explained that Ran-Ran (the word a very little Harrison made from “granny”) did die of cancer, but a very different kind of cancer, one that is much harder to find and get better from. That I have a kind of cancer that many, many people get well from and that’s what I planned to do. Then we told them that Zayde (my father) has prostate cancer. “Did you even know that? He’s had it for years and he’s fine; you didn’t even know he has cancer.” How convenient that we could share this truth as a way to stress that there are many kinds of cancers—and that mine is hopefully beatable.

We didn’t make any promises. I’m a real stickler for not making breakable promises. But we focused on what we all hope and think and pray is true.