Go Home, Anxiety, You're Drunk

Noelle turned five months old yesterday. Quinn asked if we could celebrate with a party, but I can see right through that ploy for cake. So I said we'd do one next month, perhaps with Funfetti cake. I might even spring for balloons and invite some people because it will be the end of the school year here in Arizona, and maybe our legislature will have acted by then to PAY TEACHERS WHAT THEY'RE WORTH and possibly increase per student spending, too. That would be cause for celebration. What? You don't celebrate your babies' 1/2 year birthdays when they coincide with hypothetical legislative victories?

In the meantime, our teachers have voted to strike if the legislature hasn't acted by next Thursday, which I support 100%. I am surprised it took them this long, considering as a state we are $1 BILLION short of education funding compared to a DECADE AGO. Meaning there has not been an increase in education spending here in my son's LIFETIME. There are reports of rats in some classrooms, buildings are falling apart, and our teachers are grossly underpaid. 

So I fully support our educators walking out until our governor signs adequate funding into law, but I will also be at a conference in Chicago starting next Thursday and unable to help with taking care of our children for a few days. SORRY CHRIS'S BOSS.

More on the conference soon, but this post is supposed to be about Noelle. 

For the grandparents and great-aunts and uncles reading: at five months, Noelle is still weighing in at the tenth percentile, the little peanut. We adore her, and at least once a week, I get teary-eyed at how lucky we are to have her, at how unlikely and miraculous it is that she's in our lives. Baby girl spends her days giggling at funny sounds, drooling until her shirts are soaked, watching her older brother like a hawk, almost sleeping through the night, and has rolling onto her side down to a science. She'll figure out rolling all the way over one of these days. I'm not worried. 

Not about her development, anyway. 

On the other hand, I have been an anxious wreck the past couple of weeks leading up to this time period. At first, I couldn't figure out why. Some people talk about how the changing light around the equinox can exacerbate feelings of darkness or cause a certain tightness in your chest, but we are well past that point in the season. What I've been feeling is more than unease. It's more of a crippling foreboding that something terrible must be about to happen. That somehow, despite our five-year journey shit-show with cancer, we still got off too easy. 

That perhaps we don't deserve these incredible moments with our little girl. YES, I KNOW THIS SOUNDS CRAZY. It also makes it really hard to parent happily and with enthusiasm right now. So what's going on with me?

The last time I had a five-month-old infant, I was diagnosed with cancer. 

Photo of Quinn at almost-5-months-old next to Noelle at the same age, in the same seat. My hand looks like a claw.

The simple typing of that sentence has me erupting in sobs, so clearly I have some processing left to do. So much for this post being about Noelle. Related: I am actively accepting recommendations for therapists who take our insurance. They are surprisingly difficult to find. 

I worry about nearly everything lately, with abandon: violence at public schools, which admittedly is a very real fear shared by many, many parents these days; Quinn choking on an apple while I'm in the other room (hasn't happened, but could); whether my occasional night sweats are normal postpartum or a sign of lymphoma; if the dog has thrombosis (was just a scratch, says the vet, so I can cross this one off my list for now); and all kinds of other scenarios that alert me that my anxiety is on a bender right now. Chris tells me worry is rarely ever productive, which, sure, makes sense if you can consider these things logically. 

Is this just some twisted version of survivor's guilt? A fear that history is bound to repeat itself? PTSD? I mean, I can diagnose myself all day long, but sometime soon I've got to stop fearing the past and worrying about the future, right? And contain my worry to very real things like under-funded schools and how to dress for a conference in Chicago this time of year. I mean, plenty of people have five-month-olds without the sky falling, or so I hear. Right?

The Darkness is Only Ever Temporary

Just when I think I've sorted through all of my emotions about my cancer experience, a song comes on Pandora and I ugly cry in front of my six-year-old. And it's a song from Twilight, no less:


But it's also a song Quinn and I danced to at a wedding when I was still in the throes of chemo and scared out of my mind. Hearing it brought me immediately back to that time, and my emotions erupted before I knew what had hit me.

This song interrupted our Scrabble game last week, because that's what we do now, when he's not asking me who will run on the Democratic ticket in 2020 or reading Harry Potter to me or trying to listen to his baby sister's heartbeat through my belly. So much has changed in the last eighteen months, especially, and words often escape me when I'm trying to reflect on it all. I did think I was past the ugly tears.

Clearly, a favorite activity of ours.

This past Saturday marked six years since my diagnosis. Six years of terror, relief, anxiety, grief, hope, and far too much chemo to count. Five years of wondering whether I would live long enough for this little wonder child of mine to remember me. Four (and a half) years receiving chemotherapy, an infusion at least every three weeks. Three years writing a memoir about the whole experience. Two years in chemically-induced menopause. One year since everything changed.

But who's counting?

Last Saturday also happened to be the day ushering me into my third trimester of this pregnancy. I have so many mixed emotions about this particular cancerversary milestone. Six years is obviously something to celebrate, but so is every day. So is a new life growing inside of me, rolling and kicking and hiccuping almost as much as Quinn did in utero. And while I celebrate my own milestones, I am still so angry that so many of my friends are facing this stupid disease. 

Last week, one of my closest friends had a bilateral mastectomy because they found what appears to be early-stage cancer in her left breast two days before her 37th birthday. I naively thought I'd taken one for the team, so to speak, with my group of friends, and that no one else in my immediate circle would have to deal with this shit-storm until we were all at least post-menopausal. I don't know why my brain tries to play tricks on me like that. I should know by now that is not how cancer works. 

I am mad that it is good news when another of my friends, Beth, only has to contend with lung mets that make her cough so hard she vomits and brain mets that send her into seizures. It is good news because at least she is not facing hospice right this minute. At least we have her voice and her brilliant advocacy efforts for a bit longer. And I celebrate because I got to hug her when I was in Seattle last month.

I am terrified about when the other shoe is going to drop, for me, for Beth, for so many of my friends. I worry that I got out of this too unscathed, despite my scars, my lack of breasts, my lack of eyebrows. So I celebrate, yes, but I also cry loud, body-rocking sobs in front of my six-year-old every once in awhile. 

Then a phenomenon like the eclipse occurs, and we pulled Quinn out of school to make a pinhole cereal box viewer and watch the events from a lawn at ASU. The whole country, it seemed, came outside to watch, and I am reminded that the darkness in our lives is only ever temporary. That these moments are magical, and worth celebrating. Here's to the light.

#eclipse2017 I'm taking its lesson to heart: darkness is only temporary.

A post shared by Jen Campisano (@jencampisano) on Aug 21, 2017 at 12:22pm PDT

Let's Talk About Sex (After a Cancer Diagnosis)

“If you’ve had chemotherapy, your sexual function has been impacted.” -- Dr. Sage Bolte

Most of us are pretty reluctant to talk about sex and intimacy in the wake of a cancer diagnosis. We think we should be focused on getting rid of cancer, or staying alive, so quality of life issues often take a back seat to the urgency we feel to be well. During active cancer treatments especially, sex is probably the last thing on many of our minds.

But at some point, most of us want to touch and be touched again.

I talked to one friend recently, who was diagnosed with breast cancer when she was twenty-five. She is in remission, but takes ovarian suppression medications as well as an aromatase inhibitor. She isn't even thirty and she's in menopause.

She described it as “life-altering,” to go from being a 25-year old with a healthy sex drive to basically not thinking about it for long stretches of time, and then only because she would start to feel twinges of guilt for physically ignoring her live-in boyfriend (whom she describes as a saint).

"It's never addressed," she said. "Oncologists don’t typically bring it up, unless you have the courage to talk about it first, and it’s hardly a comfortable topic. It’s mind-boggling."


Dr. Bolte, who spoke at the conference I attended at AstraZeneca about intimacy issues and about depression and anxiety after cancer, says this hesitance to discuss our sexual selves with our care team is unfortunate, because there are solutions.

One of the primary reasons patients give for not bringing up intimacy with their doctors is they fear there's no way around the loss of it during (and even after) cancer treatments. But sexual dysfunction is one of the top quality of life issues concerning cancer patients. And according to Dr. Bolte, the incidence of altered sexuality can persist for years.

Obviously, my experience is with breast cancer, treatments for which can cause a litany of side effects, including:

• mouth sores
• fatigue
• dry, cracked skin and mucous membranes
• often, loss of or damage to a major sexual organ (breasts) due to surgeries and radiation
• vaginal stenosis (narrowing) due to chemically-induced menopause
• hair loss
• weight gain (or loss)

Other cancers can lead to similar side effects, and my guess is that no one who's been through cancer treatments has been left unscathed.

In addition to debilitating physical effects are the pschyo-social and emotional ones. Partners often take on the role of caregivers, and it can be tough to transition between the caregiver/patient and lover relationships. It can also be tough to maintain a sense of peace about your body when you might feel it betrayed you by "letting" cancer happen. Or you might be self-conscious about a new appearance.

After active treatment ends, for those of us who are lucky enough to be able to move on to targeted therapies, sexual function may lag behind. According to Dr. Bolte, most of us want healthy, active sexual relationships, but many are reluctant to bring up the topic with our healthcare providers. Not helping is that most oncologists are just as reluctant to bring it up with us, their patients. 

So what can you do? What are the solutions?

• Discuss your concerns with your doctor. If not your oncologist, then maybe your gynecologist who may be able to recommend strengthening exercises or non-hormonal lubricants that can help. There is also this, which "can be done in lunchtime." How's that for innuendo?
• Talk to your partner about expectations. Sex during chemo is probably not a priority, but maintaining intimacy should be. Hold hands or cuddle during marathon episodes of Orange is the New Black. Make time for date nights (or afternoons, since us cancer patients are often exhausted by the end of the day.) Dr. Bolte said one couple she knows of started reading erotica to each other and arrived at their next therapy appointment with shit-eating grins on their faces.
• Communicate about desires and needs. This seems so straightforward, but things change so much after a cancer diagnosis. I'm noting it again because it is so true for me: we are often exhausted at the end of the day. Rethink when you might be more willing to connect. And certain areas might be too sensitive or painful to touch. Share these things with your partner before you're fooling around so that feelings don't get hurt if you recoil when your scar tissue accidentally gets grazed. 
• Go back to some of the basics. Make out like you're in your parents' basement in high school. Wear pretty lingerie if that's your thing. Write each other love notes. Take a bath together. The goal doesn't need to be sex as you once knew it. 

For additional resources, Dr. Bolte recommends the following books: Men Cancer Sex, Women Cancer Sex, and Sex Matters for Women: A Complete Guide to Taking Care of Your Sexual Self.

Around the Web

I've about recovered from the beating my body took last weekend. I admit I haven't been monitoring the headlines as closely as usual between walking almost forty miles and traveling with a toddler. But here's what caught my attention on the web last week.

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Researching targets for triple negative breast cancers

"If her approach is successful, we may have a new way to deliver drugs with precision: not just to cancer cells, but to any type of diseased cell or organ with a distinctive pattern of proteins on the surface."

And some not-so-great news from the clinical trial world.

"The long-awaited results showed that adding lapatinib [Tykerb] to adjuvant trastuzumab [Herceptin], either concurrently or sequentially, does not increase disease-free survival compared with use of trastuzumab alone in women with early-stage HER2-positive breast cancer."

We may someday be able to predict who will benefit from Tamoxifen. . .

. . . eliminating unnecessary side effects for so many women.

"A gene signature identified using a new approach has the potential to be used in the clinic to predict which patients with estrogen receptor-positive breast cancer will benefit from tamoxifen therapy after surgery, according to data published in Cancer Research, a journal of the American Association for Cancer Research."

And what if we eliminate hormone receptors altogether?

New developments for treating estrogen-receptor positive breast cancer from one of my favorite companies, Genentech.

More research suggesting we are overdoing it with mastectomies

"'Most patients have very minimal increases in life expectancy, one to seven months," Tuttle said. And that difference was spread over two or more decades, especially in the younger women, he said."

No regrets here.

Finally, are antioxidants harmful to cancer patients? 

Let the conversation begin (or continue). When I was seeing my naturopath regularly, he suggested I have infusions of Vitamin C to combat cancer growth, but my oncologist strongly advised against it. I went with my oncologist, and now I'm rethinking the supplement I add to my occasional morning smoothie, too. Do you take supplements? What are your thoughts on antioxidants? Does this study change your mind at all?