Personal home chefs, meal trains, and living among friends.

Written by John.

Lots of you have asked when we have communicated what you can do to help. Mostly I have given you one form or another of a puzzled look and slight shrug, because that’s pretty much what I do when someone asks me to make a decision of any kind. But one of the big things we’ve already been struggling with has been preparing dinners. Breakfast is not a problem. Lunch is really easy, particularly when the kids are in school (thanks Guilford County!!). Dinner is our bete noir. It kills us. Every night.

Fortunately, one of the first things that anyone did in response to Nina’s diagnosis was that our good friends Eliza Harrington Myers (NER’s lovely and talented best friend from high school, who is a NICU doctor and somehow has time to raise three girls and take good care of us at the same time) and Debbie Harrington (Eliza’s equally lovely and talented mom who somehow has time to have a career in retirement, travel the globe, tend to her plethora of beautiful children and cute grandkids, and take care of us as well) set up an account for us with a prepared food service, 2Girls Chef Services and Catering. The service is absolutely wonderful. I cannot recommend it enough. They make great food, they specialize in diabetic-friendly meals, they bring it to your house, unpack it, and tell you how to prepare it (which is mostly “heat this up and eat it.”).

The service set up an online account for us so that our family and friends can put money on it and send their support from afar. Debbie and Eliza got it going. My mom, who lives in Oregon, added to our account, for example. For those who want to help, but are either remote or simply don’t have the time or inclination to cook things, this is definitely something that has helped ENORMOUSLY and would be much appreciated. Here is the info for our account:

The link is: http://2girlscateringco.wix.com/2015#!riggn15506/c17i
The password to access it is: Mendenhall

You can put any amount you want to on the account. You don’t really have to do anything more. We can just order meals weekly as needed. So as our needs change (NER has surgery, chemo, radiation, etc.) we can adjust. We don’t really know what our needs are, but it’s overwhelmingly likely that dinner will be among the keenest.

Another very generous thing that is being done for us is that our friend Melissa Tarleton is taking time out from two boys and running a business of her own to set up a “Meal Train” account so that people who DO want to cook and schelp food directly to us can sign up to do so. I feel odd asking people to cook for us, but we both recognize that, given we’re already struggling to get food on the table every night with all the doctor’s appointments and planning, once surgery and chemo hit we will probably need to take advantage of all the generous offers you all have already made. So if cooking is your thing, please check out the Meal Train account Melissa set up:

https://mealtrain.com/q77ne8

There is a calendar with days marked when meals are needed. We’ll update it as we get a better sense of ongoing needs during chemo and beyond. I think you will need to create an account to use it, but then it’s just a matter of finding a day that works for you and signing up. Melissa has already been our one-woman meal train, and she will be your conductor if you choo-choo-choo-choose to participate. Ha! The Simpsons was a great show.

If you prepare us food using the Meal Train thing, we are pretty wide-open in terms of our tastes. Freddy and I are both diabetic, though, so meals that are not carb heavy are better. However, we do not eat carb-free at all. We just try to use brown rice instead of white, and not have many pasta-based meals. We go easy on dessert. Otherwise, we like lots of different kinds of food. Good food. Ok, Benny doesn’t like anything except a specific brand of chicken sausage, chicken nuggets, chocolate, and noodles.But he’s kind of an a-hole about food, so just ignore him. If you cook it, we will probably like it.

Anyhow. There is a lot of info in this update. If you have questions about the Meal Train, you can communicate with Melissa via the site. Questions about the 2Girls Catering thing can be put to them (or me: duberstein@gmail.com).

Thank you all, again and again, for being there for us and making us feel your presence so keenly just as it was most needed. I can’t even express how good it feels after a difficult day to have a warm, home cooked meal. It seems simple, but it really is magical, life saving, stuff.

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Holes in the knees of my genes.

Yesterday I got some good news. I am BRCA negative.

When a young woman is diagnosed with breast cancer (one good thing about getting breast cancer before age 50 is how often people start describing you as “young” again), particularly if there is a family history, they like to do genetic testing. While only 5-10% of breast cancers are officially considered “inherited,” those that are can be linked to a higher rate of recurrence, as well as an elevated rate of developing certain other cancers like ovarian and colon cancer. And of course, the risk can be passed along to children and identified in family members.

In my case, my grandfather had breast cancer (that always gets the doctors’ attention), as well as his sister and his daughter—my aunt—and several other family members. My aunt tested positive for one of the known genetic mutations that can cause breast cancer—BRCA2.

Several years ago, I was tested for my aunt’s specific mutation. There are literally hundreds of different mutations of the two known BRCA genes (BRCA1 and BRCA2), but at that time, insurance would not pay for the test unless you had already been diagnosed (go figure) and testing for the whole panel of genes cost thousands of dollars. Being tested for my aunt’s specific known mutation only cost a few hundred dollars, so I went that route. The test came back negative.

This time they did the whole panel—plus 20 other genes that are associated with various cancer risks—and my insurance paid for it (hooray breast cancer diagnosis). And yesterday I got the lovely call from the genetic counselor telling me everything came back negative.

A big loud PHEW.

One really interesting thing she told me, though (I could talk to the genetic counselor for hours, I think)—is that studies have found that even in women who are not BRCA mutation carriers, simply having a BRCA mutation in your family can significantly (3 to 4 times) up your risk of contracting breast cancer. She thinks I am likely in this category.

That seems so mysterious to me—it’s not written in the genes but clearly it is!

In spite of all the incredible knowledge and progress we’ve made, there is so much no one knows or understands. You have to be kind of impressed by the complexity of life—even cancer, as though we’re shining our hugest, most powerful flashlight into the night sky to find out how big it is, just to realize exactly how big its is when its brief beam is eaten up by the dark.

How self-awareness could save your life.

Not to worry—I’m actually not swerving into the realm of pop psych / self-help here (although—thoughts for another day—it turns out things like cancer certainly evoke what fIMG_0326eels like a sprawling bog of maxims on the “right” way to live your life—Be a fighter! Stay positive! Let it go! Accept what comes! Keep the faith! Seize the Day!—it’s kind of dizzying.).

Instead, this kind of “self-awareness” is of a sort I have learned recently from my oncologist—or, at least, he put the name to it. And I want to put it out there for other young(ish) women who wrestle with—as we start to age—the conflicting messages we get about self breast exams.

Chances are—particularly if you’ve had kids and nursed your babies—you’ve been told an array of somewhat contradictory things about giving yourself monthly breast exams by both practitioners and the internet: do it religiously—use this handy shower card as a reminder; don’t do it—it only provokes unnecessary anxiety and most lumps are found on screening exams and not in the shower; do it if you think of it—it can’t hurt; what’s the point—breasts are lumpy, especially after pregnancy; 90% of all breast lumps are benign, etc.

I, for one, have been told all these things. And I have basically practiced some version of all of them. I am both an anxious person and a person with breast cancer in my family, so I have walked a careful (but mostly pretty blind) line of not wanting to make myself crazy but not wanting to be stupid either. Because I am still in my thirties and do not yet have regular mammograms, I have erred on the side of periodic but non-systematic lump investigation. A kind of half-hearted whenever-I-feel-like-feeling-myself-up-a-thon.

And it was in this context I discovered my breast cancer.

I would not have said I knew my breasts particularly well—whatever that means. There are certain lumps and bumps that I guess have been kind of on my radar for a long time, but I don’t have a mental map of them or anything. Nevertheless, when I felt this little knobiness located at 12 noon on the Breast Clock—even though it wasn’t really hard or fixed or big or menacing—it felt different and it got my attention. In fact, finding it sent an instantaneous shock of fear from my fingertips down to the soles of my feet that prompted me to scrunch up my face and exclaim “Fuck!” to a pretty surprised, absorbed-in-his-book John.

The crazy thing is that—post reassuring-but-let’s-be-cautious doctor exam, post mammogram, post ultrasound, post mammogram-guided core biopsy, post MRI with and without contrast, post surgical consult, and post oncologist work up—everyone says there isn’t actually a mass there. The mammogram showed microscopic micro-calcifications in a suspicious constellation in the spot I felt—too small to palpate. The biopsy would prove them to be malignant. But there is no official lump.

What I was feeling, it turns out, was what they call a “breast change.” Yet, I would never have believed it if you told me I would be capable of recognizing something so abstract.

Anyway, flash to the oncologist’s exam room and the part of my boob narrative I hope is helpful to others—“Good job,” he says (“Oh, thank you!” I beam internally—I’m GOOD at cancer!!), “You found something no one but you would have noticed. This is what I tell women to strive for: forget the ‘self exam’—it is stressful and often misleading. Just try to know yourself, consciously or not—just do your best to practice self-awareness.”

It’s a load off, isn’t it—to be told to trust yourself? It’s not fool proof, it’s not scientific, it does not replace annual screenings, but it’s something we can do without making ourselves crazy. It’s also something we women do far too little of.

On not knowing.

I don’t usually make New Year’s resolutions. I’ve always shied away from tempting fate by being too attached to the direction things take. So unnerved by chance and so prone to fretting, I struggle to risk wanting something badly because I know how undone I will be if it doesn’t work out as imagined.

I was superstitious and squirrely about my pregnancies. Scheduling vacations months in advance has always seemed awfully chancy. Even planning more than two meals at a time feels a little presumptuous.

It is odd to me, then, that this year, just before drifting off while watching a very underdressed Taylor Swift shiver her way through the ball drop, I actually made a bonafide resolution, possibly for the first time since middle school when my list involved 1. Work on taller swoop with bangs 2. Figure out what Nair is for and 3. See the California Raisins in person (I accomplished none of these things, so—see!).

Even odder, is that my resolution was this: to get better at being okay with not knowing exactly how things are going to turn out.

So. Enter cancer, one bitch of a teacher.

I’m still in the pre-treatment stage of all this. Right now it’s ALL not knowing and not acting. It’s just being in it, without really knowing what it is.

Yesterday, talking on the phone with my Breast Cancer Navigator from the cancer center, I was fretting about having the surgery pushed back so far. (Someone tells you something deadly in you is, to quote the oncologist, “not growing at NASCAR speed but hurtling down the highway nonetheless,” and then you’re told to not worry about waiting a few more weeks—there is ample fretting to do there.) And the Navigator, clearly trying to avoid using the terrifying words/concept of metastases, says, “Oh, honey, don’t worry. It’s not going to grow out of your breast and turn you into an alien between now and then.”

Turn me into an alien! I hadn’t even considered that possibility yet! Don’t worry—now I will!

But I’m actually trying really hard not to. I’m forcing myself not to check for slimy tentacles or a third eye. And I’m refraining from compulsively googling “brain metastases symptoms” or searching whatstageismytumor.com—which if you know me, IS NOT AT ALL EASY.

I’m not going to pretend I have learned anything yet about how to gracefully exist in the space between being healthy/okay and being an alien. I definitely have not. And I’m officially banning Taylor Swift and meal planning forever. But I’m breathing in and out and looking all around and I guess what I’m feeling is that I’m up for this.

A Change of Plan: hurry up and wait.

written by John

One day each of us will die. None of us knows exactly when, is the trick. It could happen most any time. It may very well happen while you are on hold with a doctor’s office administrative assistant being told, in a professionally cold toned Voice, that your “procedure” has been rescheduled and will happen a few weeks later than originally planned. It may come, thundering down astride one of the four horses of the apocalypse, while that same Voice, now slightly annoyed, tells you that we CAN’T be having chemo, because you’re not even scheduled for a portacath. It could strike like lightning while that Voice backtracks, perhaps perceptibly humbled, when the person attached to it on the other end of the phone realizes that she’s been professionally cold, not to another voice at the end of a scheduling call, but to a flesh and blood person who is in fact pondering her own mortality for the first time due to the very procedure the Voice has called to say is no longer going to take place with as much dispatch as previously foretold. It could steal into that very conversation, like a bicycle thief, unseen, unannounced, while the Voice, ironically, tells you that the reason the procedure has been rescheduled is because of a death in the surgeon’s family. It could be that the tumor he was supposed to remove, but which now will be left to fester and spawn and spew illogical filth throughout your breast and limbic system, was just waiting for this opportunity to pounce.

It could be that’s what’s going to happen. Except that it isn’t. It just feels that way. The reality is that they just changed Nina’s surgery from this Wednesday (February 18) to March 6, and we are fairly assured that this will make no difference in her care whatsoever. Though by “fairly” I really just mean “enough so that we’re not actively going to do much about it,” not that we feel great about the delay. But we have a semi-logical side that knows she’ll still get great, timely care and be none the worse for having it a few weeks later.

I don’t know, it’s not happening to me. But I think once you have been diagnosed with cancer, everything feels that way. And there’s no way to stop yourself from tumbling down every rabbit hole that every voice on the end of every phone opens up under your feet. Even when you have wonderful friends and family to support and encourage you. Even when the support and encouragement is above and beyond what you thought or expected. Even when you have extraordinarily cute kids to dote on you, cheer you, and pass gas incessantly in your lap. Even when your exceptionally sensitive, perceptive, resourceful and HANDSOME mate is there to support you and say perceptive, resourceful, HANDSOME things, such as “it’s all going to be OK,” or “there, there now, sweetheart, don’t let it get you down,” which, let’s face it, who COULDN’T BE CHEERED AND UPLIFTED BY THAT EVEN IN THE FACE OF CANCER?!! SERIOUSLY??!! I DEFY YOU TO BE MORE PERCEPTIVE, SENSITIVE, OR HANDSOME!!! Or to make better use of the serial comma or ALL CAPS. Even then, the small discontinuities in the plan lead, somehow, in your current state of unmoored existential drift, to inexorable death. Nina actually deals with this existential drift pretty deftly. But I’m still struck by how the simplest curveball can really throw you, even an experienced hitter like her, who’s been through cancer treatment with her mom and has seen just about every angle of it (except her current one). It’s been one of our biggest challenges so far. You have to learn to get right with unsettling things, then learn to get right with it all over again when the things change.

Anyhow, for my first contribution to this journal I wanted to let everybody know about the change of plans, and maybe also exorcise some of the demons of changed plans and expectations, which sound relatively minor even to me when I’m writing about them, but are oddly upsetting and outsized when they happen in context. Later surgery; same course of treatment. No certain doom. Staying the same course. But no real existential ease yet, either.

Practice

Nothing earth-shattering to report. (I plan to get better at this blogging thing.) Lots of internal roller-coasting. Lots of waiting, practicing.

Mostly I just wanted to stick this poem up here. I have always loved it–one of my top 10 faves–but in the last few weeks I’ve just wanted to swallow it whole. I love her balance of high emotion and deep calm.

Practice
by Ellen Bryant Voigt

To weep unbidden, to wake
at night in order to weep, to wait
for the whisker on the face of the clock
to twitch again, moving
the dumb day forward—-is this merely practice?
Some believe in heaven,
some in rest. We’ll float,
you said. Afterward
we’ll float between two worlds—-five bronze beetles
stacked like spoons in one
peony blossom, drugged by lust:
if I came back as a bird
I’d remember that—-

until everyone we love
is safe is what you said.

One small spot.

“One small spot” is the mantra I used to get through the cramped clanky cave of the breast MRI I had on Jan 24th. It helped. These days I say it dozens of times a day. It calms my breathing, and I’m counting on it to be true.

After finding a small, non-scary-but-different lump in my breast right around the new year, I was diagnosed with a triple negative (boo) Invasive Ductal Carcinoma. We think it is likely to be stage 1, but we won’t know for sure until after I have a lumpectomy on February 18th. The tumor is aggressive but hopefully still small and contained (ONE SMALL SPOT!). After the surgery, I’m scheduled to start 3 months of chemo, and then 6.5 weeks of radiation.

I believe I know more women than I can count who have had to walk this same crappy path of breast cancer, and many many others on what basically seems like an interstate of cancer anymore, and well SHIT and SIGH but here I go.

Already, the world’s most thoughtful, caring friends and family have made this infinitely better. My mom and dad are my north stars in all this, although I wish for their sake they knew this rigmarole a little less well! Freddy wants me to get a bionic breast and make me into a new mutant superhero. Someone needs to do a clinical trial to assess the healing powers of Benny’s nuzzliness. And John — pen and legal pad in hand to cross-examine any doctor and an inappropriate joke ready for any occasion under sun — is keeping me calm, laughing, and loved. What more could I ask for?