An Apple a Day: Breast Cancer, Research and Being Proactive

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About six months ago, I got a letter from my health care provider asking me to participate in a study. They’d chosen me, the letter said, because my breasts had a significant amount of dense tissue, and therefore, I had a higher than average risk of developing breast cancer.

I stared at the paper and felt a chill. I didn’t know I had dense breast tissue, and I’d never heard this was associated with breast cancer.

I’m no stranger to breast tissue or cancer.

My mother developed breast cancer when I was in graduate school. It was a tumor the size of a grain of sand. Slow-growing and relatively non-aggressive. The doctors recommended a lumpectomy and radiation, which she did. And now, almost twenty years later, she remains cancer-free.

When your mother receives a diagnosis of breast cancer, her life changes. But yours does as well. Not as much. Not nearly. But now someone you care about will live with the specter of cancer because you’re never really cured.

After my mother’s surgery to remove the lump, she had several more surgeries to take out suspicious tissue. All benign. But when you’ve had cancer, the doctors become hyper-vigilant. The first five years after her lumpectomy she had so much tissue removed for biopsies one breast become significantly smaller than the other. She had breast reduction surgery to rebalance her body.

My mother considers herself lucky. Her tumor was small, the cancer seemingly contained and she didn’t have chemo. But she still went through a lot. And every year, she holds her breath as she goes to the oncologist for her annual checkup, her ongoing reminder the cancer could return at any time.

The day my mother was diagnosed, my risk for developing breast cancer shot up, and her doctor told me to make an appointment for a mammogram. I did, and when I went for my session, I explained to the doctor at the university health center what had happened and said, “I guess I’m destined to get it, too.” She told me I was wrong, that my risk was no more than 10% and so the odds were in my favor.

Invited to a study.

When I got the letter in the mail about the study, I responded immediately, saying, “Yes, I want to participate.”

The study had nothing to do with medication. It was focused, instead, on education: If women with a higher risk of breast cancer were given information about their risk and ways to reduce it, would they take steps to do so?

The health care provider had created a special website, designed to educate women like me. Some women in the study would be given access to the site; the control group would be directed to WebMD. I was delighted to learn I would have an account on the new site.

I read every page, completed every questionnaire and discovered my risk for breast cancer, according to the site, was 3.7 percent over the next five years and 7.9 percent over the next ten. The average woman’s risk is 1.4 percent, so I was more than twice as likely to develop breast cancer.

I also learned about breast MRIs for detecting cancer and medications that reduced risk. Because MRIs are only recommended for women with a much higher lifetime risk (over 20 percent) they didn’t make sense for me. But I was curious about certain drugs which have been shown to reduce breast cancer risk by half.

I read about these drugs on the website and discovered:

1. It is used most often to treat osteoporosis and can only be taken after menopause.

2. The drugs work by “starving” cancer cells of estrogen, the food they need to grow, by blocking their estrogen receptors. With either of the drugs, I’d have to take a pill every day, and they both come with some nasty side effects, including a higher risk of stroke. Moreover, they’re expensive. It (which I investigated because it seemed to be a bit more benign) would cost me about $100 per month.

I printed out my reports from the site, showing my breast cancer risk and “Questions to Ask,” and went to see my doctor. I wanted to discuss my options with her.

The limits of health insurance.

Here, I’ll interrupt my story and tell you about my health care coverage. I’m a freelance writer, and I buy my own coverage. When I did work for a company, I belonged to a health care cooperative, and I decided to continue my membership. I didn’t have the option of keeping the plan I’d had when I worked for a corporation, which was a pretty darn good plan. Although my membership fees are the same (about $400 per month) I have a $7000 deductible, and nothing is covered until I reach that amount in out-of-pocket costs. I’ll get back to this later.

When I called my provider to find out how much the drug would cost if I bought it through their pharmacies and if it would be covered by my plan, they refused to tell me. I had to have my doctor put in a request to get the cost. But when she did that, she was told that I couldn’t take it until I’d tried another drug and found it ineffective.

“Ineffective?” I asked my doctor in email. “Wouldn’t that mean I got cancer?”

“No,” my doctor wrote back. “It means you can’t tolerate the side effects.”

It seemed like a foolish way to go about choosing medication.

I knew the other drug was nastier, but I’d have to try it first and get really sick or maybe have a stroke before my doctor could prescribe an alternative.

“What if I pay for it myself”? I asked. She responded, “You shouldn’t have to.”

Fortunately, I have a great doctor. (If you’ve read my earlier posts, you know I kicked my previous doctor to the curb and carefully chose a new one.) She recommended I see an oncologist. That way, I could get better information, find out whether I should take medication, and if I should, maybe an oncologist would have more freedom in prescribing drugs.

Last week, when I showed up at the oncologist’s office, she was a little surprised to find out I didn’t have cancer. I told her about the study, showed her the reports I’d printed and explained I wanted her guidance on the best way to take action to reduce my risk. At that point, she seemed to warm up and enjoy having the opportunity to talk with a patient about prevention — something, I imagine, she doesn’t get to do very often.

The oncologist asked me questions about my family history and my lifestyle (did I drink, smoke, exercise, etc.) and then she left me for about 10 minutes to input my information into a risk assessment model she said was better than the one on the website. When she returned, she told me my risk was lower than what I had thought — about 2.6 perecent.

The reason, she explained, was… well, you can probably guess: I’ve never smoked, I eat well and exercise regularly, my stress level is low and I’ve never been overweight. In fact, without knowing it, I’ve been managing my risk for most of my life. Not only for breast cancer, but for a long list of other things, including heart disease, which actually plays a bigger role in my family history.

But since I wanted to do more, I asked about genetic testing, and the oncologist said she didn’t recommend that for me. Medication? Not that either. My breast cancer risk just wasn’t high enough to justify taking on the added risk of stroke.

I’d gotten the information I needed to make a wise decision.

I left the oncologist feeling better. Not because I didn’t have to take drugs with horrible side effects or because my risk was lower than I’d thought. But because I’d gotten the information I needed to make a wise decision. Which is how all of us should be able to approach our health care.

We should all have access to clear information tailored to us as individuals that lays out facts, choices and recommended next steps — like I got on the website. Then we should be able to talk about that information with our primary care physician and ask questions. And if our doctor doesn’t have the answers we need to make informed decisions, she should refer us to another doctor, probably a specialist, who does.

In my case, this fact-finding journey enabled me to choose with confidence not to take expensive medication that wouldn’t make me healthier and to continue managing my risk as I’ve been doing. This is preventative medicine — having conversations with our doctors before we get sick. And all of us should have access to it. Not only does it help us each live healthier, it keeps our entire health care system running more efficiently.

But strangely, our health care system isn’t set up for prevention. In fact, this kind of preventative medicine is downright expensive. Prohibitively expensive. My visits to see my doctor and the oncologist each cost me $250. That’s five hundred bucks right out of my pocket. I can afford that. (And not because I didn’t choose to buy an iPhone.)

But most people can’t.

Which means the majority of women who joined me in the study, even if they wanted to, won’t be able to take action. No matter what information they discover on the website or how high their risk for developing breast cancer, they won’t be able to afford MRIs or medication.

But that wasn’t part of the study.

This post was originally published on Genneve.com.

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Pixaby photo by GoPlaces

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Surprised by Cancer, Mom Shares Photo and Powerful Reminder Following Diagnosis

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The saying goes, “A picture is worth a thousand words,” and when you look at the photo of Kirstin Pretorius and her husband Maurice celebrating their 10-year wedding anniversary, there are probably more than a thousand positive words to say about it. But behind the glowing smiles and carefree demeanor, Pretorius was living with breast cancer, and she didn’t even know it.

Pretorius’ breast cancer journey began with the photo, which was taken in June during a vacation to celebrate the couple’s wedding anniversary. According to Pretorius, she had no reason to be alarmed about her health. Her and her husband trained together in a daily exercise program and made it a point to raise their daughters with healthy lifestyle habits.

In this picture, I was living with cancer. I just didn’t know it yet. Ironically, this year marked the peak of my ‘health’ and my fitness. I’ve never felt better, stronger, or more comfortable with myself than I did turning 34. My marriage had never been better and my children were thriving. Everything was beautifully bright. But, despite feeling perfectly well, I went for my routine yearly health check. And that’s when they discovered ‘the limp’. The lump. I look at this picture from a simply blissful family holiday celebrating my 10 year wedding anniversary and all I can think is… ‘KIRSTIN how can you not know that there are 3 tumours thriving away in your breast? How can you not FEEL the cancer slipping into your lymph nodes? Why don’t you FEEL sick? How can you be so stupid?!’ But I didn’t know and I didn’t feel. If my doctor hadn’t examined me, I’d still be blissfully unaware, reaching new fitness goals with my body, eating my futile little anti-oxidant high virtually-vegan wonder food diet… I’d be packing my little plastic-free super food school lunches for my girls, lecturing them on healthy lifestyles. I’d be chemically-free cleaning my home wondering why the whole world doesn’t use essential oils. All the while growing and feeding my precious cancer. So check your boobs. Know your body. Cancer happens. To anyone. #breastcancer #breastexam #cancersucks #knowyourbody

A post shared by Kirstin Pretorius (@kicking_the_big_c) on

But everything changed just weeks after the photo was taken. While at a routine health checkup, her doctor noticed a lump in her breast, which surprised Pretorius as she was always vigilant about her yearly checkup, pap smear and breast exam. She even did her own exams.

“I honestly believed I would have noticed a change in my breast,” Pretorius tells The Mighty. “But I didn’t. It could only be felt when I was lying flat with my arm above my head. I had been checking in the shower before, but now realized I had been doing it wrong all along. Thank goodness I had a doctor examine me!”

The discovery of the lump led to an ultra sound, which led to a mammogram, which led to a painful and extremely stressful biopsy. That led to the call that no one wants to ever hear: the “you have cancer ” call.

Pretorius was diagnosed with breast cancer in her right breast on June 23, 2017.

She was immediately referred to a breast surgeon who booked her for a single mastectomy the following week. With everything moving so quickly, there was little room to grieve with her husband, children and extended families.

“We walked in a fog of numb shock.”

The uncertainty and fear of not waking up after surgery loomed over Pretorius. Discussing implants, saving nipples and putting in expanders, she said, was a nightmare, but thankfully, the surgery was a success.

“I woke up with a new numb boob and a nipple! I was euphoric. I had survived and wasn’t a mutant,” she said.

The euphoria lasted about half a day, which is when her daughters finally saw her. They had missed their mother and had been dealing with nothing but uncertainty since diagnosis, so they all cried together and held onto hope for the future.

After what felt like forever in the week waiting for the results of the surgery, Pretorius was dealt another blow. She had three tumors that collectively amounted to 6 centimeters in width. There was also cancer in one lymph node. Chemo. Hormone therapy for five years. Probably radiation.

“We were left spinning,” she said. “This is long-term. Our life is never going to be the same.”

Today, Pretorius is halfway through three months of chemo. Although it’s a rollercoaster of a ride, she said she takes it one day at a time, thanks to awesome friends who do things like throw her a pre-chemo party.

A supportive father.

And a loving husband.

It’s not exactly what we had planned, but there will always be moments of magic ???? #cancerfighters #rockingitbald

A post shared by Kirstin Pretorius (@kicking_the_big_c) on

She also has an amazing sense of humor! One minute she’s saying goodbye to “overrated hair.”

The next, she’s changing personas with wigs.

Poking fun at chemo.

This danger space zone is actually me having my first chemo! The scalp ‘cooling’ machine (ha more like scalp ‘freeze’ and ‘suffocate’ machine) was the first challenge. Fortunately once they froze my fingers, the hour of frost bite torture took my mind right of my throbbing scalp. Small victories!! Ooh well, anything to prevent these finger nails from falling off! Challenge number 2 was watching the nurse climb into full toxic waste protective gear (goggles and all) just in case some of my poison splashed… But oh no it’s perfectly safe to put it directly into your blood stream! BUT, Chemo one is done and dusted. ???????????? Thank goodness I had my beautiful blankie and pashmina from gorgeous friends to keep me warm all day. ???? and i felt all the love sent from across the world ????… Thank you! #breastcancer #chemo #cancersucks #cancerwarrior #scalpcooling #frostbitefighter

A post shared by Kirstin Pretorius (@kicking_the_big_c) on

And getting ready to embrace the turban.

But going through chemo does have its dark days, as Pretorius now knows all too well. She admits to never having depression or anxiety before breast cancer, and has to learn how to cope with the negative side effects of treatment.

My head yesterday before I shaved even shorter. Just delightful! It didn’t elegantly drop to the ground like autumn leaves. It ripped away in painful patches to accentuate the face of disease. In addition to the obvious horror of losing yet another symbol of femininity, for the last few days my scalp has been ALIVE. I could literally feel the hair follicles burning and screaming as they died. My scalp was itchy and sensitive as if covered in a raging rash. And then there’s the anxiety. I knew it was going to happen between chemo week 2 and 3, but when it arrived, I was knocked to the ground. I lay awake feeling my hair over and over for more loss. I tossed, dreaming of turbans and wigs and strong winds revealing my scalp. And now I lay openly exposed. Dear stranger, I have cancer. I can no longer hide. This is my new identity. There is no anonymity. #cancerrealities #cancersucks #chemosucks #chemohair #scalpcoolingsucks #itallsucks #chemo #fightingalltheway #balderbutbolder

A post shared by Kirstin Pretorius (@kicking_the_big_c) on

Pretorius is sharing her cancer story on social media for a few reasons. First, she wants her story to illustrate the importance of regular health checkups and taking charge of your own body. People need to take time to know what’s happening in their bodies, note changes and act on them. To her, early detection is key.

The second reason she wants to stress is that no one is immune to cancer. You can get it despite living a healthy and active lifestyle.

“Everyone is at risk. I was young, fit and extremely healthy prior to diagnosis,” she said. “I didn’t have a family history of breast cancer. I still got it.”

Finally, she wants others to know having cancer doesn’t mean your life is over. She has forced herself to find joy and create positive memories for her children. She drags herself out even when she can’t bare her new reflection.

“Yes, I’ve had to reinvent myself to have the courage to step into the world, but it is possible. It’s still possible to find happiness through the unexpected.”

Today, this full-time mom has two main focuses in life. One is to heal. The other is to raise two beautiful, strong women who can surround themselves by contemporaries who take charge of their bodies and their health care.

Her advice: “Know your body. That’s it.”

You can follow Kirstin’s “Kicking the Big C” journey on Instagram.

For more stories like this, like Cancer on The Mighty on Facebook.

All photos courtesy of Kirstin Pretorius’ Instagram page

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What I Learned After Having a Baby and Breast Cancer in the Same Year

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A month ago, my husband and I were having dinner at Table 87, our favorite Brooklyn pizza joint. I held my babbling 5-month-old baby girl on my lap, kissing her between sips of wine. I was fresh off a whirlwind business trip that had gone exceedingly well. My husband was excited about a potential job opportunity in San Francisco that would allow us to live closer to family.

As I nibbled my pizza and looked at my family, I thought, “My life is perfect.”

And then, one night, I was lying in bed marveling at the strangeness of my postpartum body — my breasts in particular — when I found a lump. I thought by not breastfeeding my boobs would stay intact, but they still felt like flabby, deflated balloons — and my left balloon had a weird hard bump about the size of my pinky knuckle. I wondered if it was my rib I was feeling, or some other totally normal body part once hidden by ample boob fat. I checked to see if the right side contained a symmetrically similar oddity, but there was nothing.

I made a mental note to tell my OB/GYN the next time I saw her, which would be in about two months. I went back to living my life, but fell asleep each night feeling that little lump, just checking if it was still there, trying to quell the bubbling panic because it was, after all, a lump.

You might be wondering why I was willing to wait so long to get checked out. Well, while I cared about my body, I never routinely subscribed to the whole self-exam thing. When my doctor would palpate my breasts and ask if I self examined, I would giggle and make crude jokes.

Recently, I remember reading a piece about breast cancer in “The Atlantic” and smugly thinking to myself, “Thank goodness I don’t have to worry about this.” Lymphoma was the cancer du jour in my family, and I had like no boobs to begin with.

Breast cancer was definitely not gonna catch this bitch.

I told my husband and some friends about the lump. Their reactions hovered in the “You’re a hypochondriac” and “You’re young” and “You just had a baby” and “You’re fine” and eye-rolling ecosphere. They all paid lip service to getting it checked out, but no one seemed to have any real urgency about it. And while I was weirded out by my little lumpety lump, I figured it was a residual pregnancy thing since so many other bizarre things had happened to my body in its post-baby-making days.

My OB/GYN appointment was supposed to be about the IUD. Hormones aren’t my friends, so the copper IUD seemed like the best birth control option. But I’d been reading about IUDs and had decided the pull and pray best suited my style and would allow me to circumvent all contraceptives and their less-than-ideal side effects.

I could have canceled my appointment since there really was nothing to talk about, but I decided I should probably have this little lump examined. We spent the first half of the appointment talking about my birth control choice and then discussing my adorable baby. And then, just as the doctor was leaving, I remembered the lump.

Jessica Sliwerski with baby

“I have this other thing. Can you just feel me up and see what it is?”

My doctor did a perfunctory examination. I remember her using words like “hard mass” and “movable” and “small” and saying something like, “It’s definitely nothing to be worried about, but I can write you a referral for an ultrasound.”

I took the referral, and a week later, I was half naked on a table while a technician did an ultrasound. Within minutes she left the room and the radiologist entered, firing questions at me about my history, my age, my lifestyle. He ordered a mammogram, and moments later, I was enduring one of the most painful and demeaning procedures I’d ever experienced.

As the machine clamped down, ferociously pinching my itty-bitty boobs, I started to sob. The technician asked if I had family with me. I said no. Why would I? I thought I was here for an ultrasound that would simply confirm what everyone else had told me — “This was no big deal.”

The radiologist brought me into his office and showed me the image from the mammogram. “You have a nodule with calcifications,” he said. Frustrated, I asked, “Well what the fuck does that mean?” He said it could mean a lot of things, but they would need to do a biopsy to be certain.

First thing Monday, I was back for the biopsy. The radiologist who conducted the biopsy said, “It’s unfortunate you’re so young,” when she walked into the room and started looking at my images. I’m certain she didn’t mean to say that out loud, but it put me on edge. I cried the entire time. Not because of the discomfort or the sharp pricks of the needle, but because I knew something was wrong by the way everyone was acting, and no one was giving me any information.

Upon completion of the biopsy, the doctor looked at me and said, “We will call you tomorrow. I want you to know that whatever we find, it is treatable.” At that point, I lost it. “What the hell is going on here?” She made some incoherent comments in doctor speak and I left the office in a numb stupor.

Waiting for the biopsy results, I willed myself not to let my head to go to all the worst places. I reminded myself I am young. Breast cancer doesn’t run in my family. I just had a baby. I am a yoga monster. I am strong. I eat well. I take good care of myself. I’m a good person. I drink tons of water. I’ve never done drugs. I lead a mostly boring life.

But none of that mattered because at the end of the day, cancer doesn’t give a fuck. And it got me.

When I got the news I was completely devastated.

And shocked.

And sick to my stomach.

And outraged.

And confused.

And sad. So sad.

“I can’t believe this is happening,” was all I could think. Over and over.

Though I could feel myself slipping into a black hole of depression, I forced myself into warrior mode. I immediately had an ultrasound and mammogram of the right breast. I had an MRI to get better imaging of both breasts and my lymph nodes. I scheduled an appointment with the most badass breast surgeon I could find. I Googled the hell out of my pathology report so I could understand everything there was to know about my cancer. I read about lumpectomies and radiation therapy and hormone therapy and chemotherapy and mastectomies. I prepared lists of questions.

Within one week of my diagnosis, I had assembled my cancer-fighting dream team — all of whom are whip smart, renowned in their fields, beautiful, badass women. I had a breast surgeon, a plastic surgeon, a psychiatrist, a therapist and an oncologist all working together to make sure I was going to fuck cancer hard.

Last week I took the first step towards my recovery — a double mastectomy. During surgery, they biopsied the lymph nodes and they looked good. Everyone high-fived. They don’t even know me, really, and they high-fived.

Jessica Sliwerski pathology bags

These are the people taking care of me. I am so blessed.

I will know more about my cancer when I get the pathology report and meet with my oncologist in a few days, but I have some peace right now knowing the lump is out.

And here’s something else that gives me comfort during this otherwise sad, difficult time: I caught this early. I found the lump. I took action in assembling my team and advocating for my needs. I saved my life.

But I have a long way to go. As I write this today, I still do not know what lies ahead in terms of my treatment. I am sad and scared and anxious. And I am grieving. I’m grieving the loss of my breasts and my nipples. I’m grieving the loss of my carefree invincibility.

But I’m also angry as hell.

I’m angry I never knew how serious breast cancer is and someone my age and without any family history could be susceptible.

I’m angry it’s become kitschy to wear pink and talk about saving boobies, but to not really understand this disease and its implications for young women.

I’m angry thinking had I been nonchalant, this would be a completely different story.

And that anger is what fuels me to speak out about this, to ensure as many women as possible learn from my story. Because health means knowing your body so damn well, when something feels just a little bit off, you notice it right away.

It means not ignoring the things that scare you and insisting upon getting ultrasounds, mammograms, MRIs and/or biopsies right away so you can be 100 percent certain it really is “no big deal.”

It might mean doing genetic testing. And it certainly means seeking out the best possible team of professionals who will take the best possible care of you — and settling for nothing less.

Cancer is random and fucked up and awful.

There is so much about this disease one cannot control. But the things we can control, we must own — like a boss.

This post was originally published on Bustle.

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A Thank You Letter to My Badass Breast Cancer Plastic Surgeon

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Dear Dr. C,

Late last night while I was trying to sleep, an entire 13-page letter to you swirled around in my head. Feeling almost commanded, I got up and wrote it all down.

I was too tired to write 13 pages  —  don’t worry , I condensed it into three max. Some of it is more for me than you and probably belongs in my personal journal (if I could find it) or blog (if I knew how to make one).

I was lying there wondering how often you receive thank you notes or even hear the words “thank you.” I imagine you reap plenty of personal satisfaction in seeing your work in its final stages, knowing you did a great job in all the aesthetic aspects  —  symmetry, contour, projection, etc.

Perhaps you see plenty of gratitude in the eyes of your patients when they see you have recreated what cancer had destroyed. And then I imagine before you can bask for too long in that “I’m-a-fucking-artist-bad-ass-plastic surgeon” another poor fellow falls through your door needing a new jaw bone or scalp. Or a woman with too much flesh complains, “I be smelling like cheese up in the church.” (That is funny, and I would have laughed my ass off had I been the nurse in the room.)

Now where was my point in all this? Cheese distracts me. Oh yes, gratitude.

Well, I should start (you thought I had started, but I was rambling) by saying at first I contemplated the very notion of reconstruction. Mostly I didn’t like the fact it was expected of me to choose it, given my age I suppose, and just because females are supposed to have breasts. Also, in the wake of a cancer diagnosis one feels a marked loss of control over almost everything. The reconstruction was one part over which I felt I could exercise some power.

I remember Googling images of women after mastectomies and coming across the most beautiful picture. It was a young Asian woman on the beach with her little daughters. All three of them wore only bikini bottoms and the woman’s chest was devoid of breasts. Instead of nipples there were two faint, perfectly horizontal scars.

She also wore the most amazing smile — a smile that said “I am beautiful without breasts.” And the smile matched the ones on faces of her children who played happily beside her in the sand.

That picture made me feel almost brave enough to opt out of reconstruction. But fear and expectations propelled me from an idyllic breastless snapshot on the beach to your exam room.

I remember emailing you after my first visit and thanking you for not being a snotty, condescending doctor. Yes, thanks again for that. Then I sent you silly pictures of my friend and me with implants on our heads in the exam room. (I’m weird, sorry!)

But those laughs were put on hold. The post-mastectomy months were dark. I did not feel well physically or emotionally. During that time there were other important decisions to make  —  chemo and Tamoxifen. Both were recommended; I chose neither.

The removal of my breasts would have to be enough. My oncologist was disappointed but supportive. You can’t possibly know how I agonized over these decisions, but I do know they were the right ones for me.

Was reconstruction the right one for me as well? Were your surgical skills magical enough to make two more surgeries, two more recoveries, more pain pills, more sleepless nights in the recliner, missing my 40th birthday celebration at the beach last weekend, and losing my apartment worth it?

The answer is a resounding yes.

To fill out a T-shirt, a bathing suit, a pretty bra.

To wash my body in the shower every day and wrap a towel around myself afterward and have breasts hold it up instead of having to wrap the towel around my waist as a man would do.

To look down at my chest in a tank top and see a little cleavage.

To sit in a room full of people and not be jealous of the women because they have breasts.

To have my 8-year-old snuggle beside me on the couch and lay her head on my rounded chest.

To still feel attractive to men.

To have the satisfaction you put back what cancer tried to steal.

You did a great job. Thank you.

I can put the rest back together now.

Truly,

Kristie Hevener Cross

This post was originally published on Medium.

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A Letter to Pre-Breast Cancer Me About What I Wish I Knew

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Dear Sue,

On February 6, after two mammograms, one ultrasound and two breast biopsies, your family doctor will phone you to say you have breast cancer. The days following will feel like you are looking down the barrel of a gun.

Here are 10 things I wish I could have told you — my numb newly-diagnosed self — six months ago:

There is a lot of waiting.

It is better to accept this rather than agonize over it. You are at the mercy of a booking clerk’s phone call at all times, particularly in the terrible purgatories between diagnostics and when you are actually diagnosed, and the time between diagnosis and the beginning of treatment.

Tightly hold onto the ones who show up for you. 

Love the ones you are with. My husband has been my rock. My children are my greatest comfort. Be open to new people coming into your life. (My Twitter friends — many of whom have chronic stuff going in in their own lives — have really stepped up for me, as have my old colleagues from the children’s hospital where I used to work).

Allow your husband and kids to help you. This can be particularly difficult for those of us who are used being the nurturers. You may feel vulnerable and guilty about this, but that’s OK. Be openly grateful for their love.

On the other end of the spectrum, it will be awful to be openly dumped, ignored or ghosted by family and friends. (The same thing happened after Aaron was diagnosed with Down syndrome, but that doesn’t make it any easier this time around). Try not to ruminate on these lost people. Their poor behavior reflects more on them than on you. If somebody says something wrong, shake it off the best you can and consider this article: “How not to say the wrong thing.” It will make you feel better.

Hang onto the little things.

Why? Because they may end up being your big things: the chirping birds, the smell of lavender, the flowering cherry trees, some old jazz on the stereo. There is great value in meditation and simply breathing — I stumbled upon these simple strategies late, but they have been my calming saviors when I was under the radiation machine, waiting for the doctor in the clinic room or just generally freaking out.

Try out different things to help you heal.

Commit to long walks. Attend mediation classes. Ask about relaxation programs and therapy services at your cancer center. Try out a support group. Go for a pedicure or massage. Canadian Cancer Society offers a Look Good, Feel Better Program, which is about wigs and how to apply make-up, but it is a pleasant way to spend a couple of hours. Look into supportive cancer care organizations, like Callanish or Inspire Health or Wellspring.

Short rant: I have been asking and asking about mental health services since early February and not one health professional mentioned Vancouver-based Inspire Health, which offers free classes like yoga, meditation, exercise and art therapy — all of which I totally could have used for stress relief. This angers me, as it feels like I have been left to struggle, which brings me to…

You are on your own to look after your mind. 

I was shocked how little the mind-body connection is considered in the hospital setting, even though science has definitively told us that stress is not good for you. I think the hospital will treat your tumor, but not you. You have to figure out your own support and go outside the cancer agency to find help. (See #4).

Also, hang onto that compassionate member of your health care team (for me, that’s my family physician, who calls me on the phone just to see how I’m feeling). These people are special and rare and can compensate for the other, less kind folks you will inevitably encounter.

Side effects suck.

Side effects are a real thing that took me by surprise. They are also often dismissed as trivial or minimized by clinicians – a hematoma the size of a grapefruit under my arm!

Drug-induced insomnia!

Fear of lymphedema!

A burned and scorched breast!

Weight gain!

Debilitating fatigue!

Permanent radiation tattoos!

What is a big deal for patients is often not a big deal for clinicians. I’ve found that online forums, like Cancer Connectionshelp; you can commiserate with others going through cancer, or at least read about what to really expect.

There’s no shame in asking for sedation before procedures or anti-anxiety meds.

This is to help you through the terrible time. Always be brave and pipe up because it may not be offered to you otherwise.

Use your voice.

Ask if you would like a warm blanket, or are uncomfortable, or have questions. Don’t forget, in Canada, taxpayers are actually the funders of health care. It is your right to speak up. (Donald Lepp’s essay, “The Art of Complaining: Going Rogue,” has some good advice on speaking up at the system level).

There are many affronts to your body.

These are not things you could ever dream up as a layperson. For instance, when they say they will “inject dye” in you before the sentinel node removal, they mean a person in radiology will actually stab your nipple with a needle full of blue dye and that blue dye will remain in your nipple for months afterwards. There are other indignities: fine wire insertions, scars, bruising, itching and burning. These affronts are weird and will make you feel especially vulnerable and fragile.

So you must, more than anything else, please please…

Be kind to yourself.

My therapist gently suggested I treat myself as I would treat my beloved daughter, Ella. This advice helped. Cut yourself some slack, my lovely. As Brene Brown says, “You are enough.” And as my dear friend Isabel Jordan has reminded me when I needed it the most, “You are the queen, Sue.” Listen to all these wise women.

I’m not gonna lie… this is going to be hard. But you will do it because you must.

Love,
Future Sue

P.S. – Never forget it is love that is going to help you heal in the end.

This post was previously published on SueRobins.com.

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Love and Dating When You're Living and Dying With Breast Cancer

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In my very first story I published about breast cancer, “Online Dating: No Nipples Required!,” I went straight up to the elephant in the room and smacked him in the face. Looking back now, it was the only way I could start. But what a way to make my debut.

Cancer can make people weird. (Or weirder, in my case).

Since then I’ve tried to distance myself from the whole cancer ordeal, or at least in writing about it. To be honest, it’s no fun to be the girl who writes about cancer, and unless you have or have had cancer, I don’t think anyone really wants to read it.

But the thing is  — once you’ve had cancer, your life is changed forever, and it becomes a part of your identity. And my perspective changed simultaneously for the better and the worst.

I think about dying a lot. If you need statistics, I was told I had a 60/40 chance the cancer would come back, and at that point, it would be incurable. But that was all before a small local recurrence and now who the fuck knows what my odds are. I could just make up a number now, so I’ll say 10/90. Yes, that sounds good.

I also think about living a lot. I’m here, alive and cancer-free for now. The now is important. What to do with the now? I have no answers for you.

How does one really live while also constantly being aware of their own mortality?

One would think it would make a person take off and follow their dreams. Often I thought about running away to Spain and writing on the beach. But there’s still the chance I might live a long time, so in that case, I still had to plan for retirement, pay my bills, etc. Either way, the reality is money — among many other constraints — is a factor.

Finding the balance between possibly living for a very short time and possibly living for a very long time is maddening. So I try to stick to this: I pretend I have exactly five years to live.

Why five years? This is long enough to make some real plans, to make a real difference somehow, to spend time with family and friends, to still find that dream job, to continue to learn and discover, and to not dwell on death.

And the five-year plan is also short enough to not be complacent, or take things for granted, or worry about stupid shit.

I’m still trying to master my five-year plan, by the way. I worry about plenty of stupid shit, e.g. last night I was sure there was a cashew stuck in my throat and I almost went to the ER. The next morning I felt fine.

I really think it’s this way for everyone, whether they’ve had a life-threatening illness or not. None of us know how much time we have left or what to do with it. (Why are you reading this? Are you searching for answers? Me, too.)

At any rate, right after I recovered from all the surgeries, I really wanted to spend some time dating. And by “dating” I mean just dating with no long-term commitment. Having been married twice, you’d think I had some experience in dating, but I didn’t. It was more like hanging out with a person a couple of times and suddenly becoming their wife.

You could say dating was number one on my bucket list. And while I was a tiny bit embarrassed of my chest, I was the most comfortable in my own skin than I’d ever been. But being comfortable (and almost fearless) didn’t last.

You see, there’s a window of time (albeit a narrow one) after a serious medical diagnosis that allows one to see the world for how it really is  —  open and beautiful and full of love. Inhibitions fall away. And all the bullshit you thought was important  — like whether your ass is too small, or you have stretch marks and enormous feet, or whether you said the wrong thing at a party  —  isn’t a concern any longer.

It’s why old people aren’t afraid to speak their minds or wear the same shirt every day. They give no fucks, and for good reason.

So back to the dating. Given the window was open, the “why” is simple: I wanted to be in love. The ridiculous “screaming-it-from-the-rooftop having-sex-until-it-almost-kills-you” kind of love. And there was a freedom in that kind of thinking , a definitive “I’m-not-going-to-fucking-settle” determination.

As you can imagine, online dating was messy, even aside from all the cancer stuff.

Just like for any other person who’s out there trying to find love, there was fun and lust and love and of course, plenty of heartbreak and disappointment. I experienced all those things, just as I needed to. Maybe I even wanted my heart broken. Who knows what was driving my subconscious? Not me.

Oh wait… life, death, life, death… now I remember.

But here’s the thing I struggle with now: I tried (or I think I tried) to just date and be in love and not become seriously involved with someone. It didn’t seem fair. Even though I was completely upfront about my previous medical history with all the guys I dated, I’m not sure they understood what they were potentially getting themselves into with me.

I still wonder if it was fair. Probably not.

An aside: I did not put “cancer survivor/warrior/slayer” on my online dating profile, but I had a strict rule by the third date I would reveal my “secret” in full detail. Most of the guys didn’t care or they pretended to not be bothered by it.

I can’t say for sure, and I also can’t say how I would’ve reacted had the situation been reversed, and that makes me feel terrible. I hope I’m the kind of person who would think, “Love is love for however long it lasts.”

And so this is how it went in the beginning of my relationship with my boyfriend, whom I’ve been living with for the last three and half years:

Me: “I am not your girlfriend. I’m just a girl you hang out with who occasionally stops by very tipsy and sleeps in your bed.”

My boyfriend: “OK. Sure, babe…”

Me: “Sigh.”

But after a couple of months of declaring myself not his girlfriend I definitely was. It was no longer my brain’s choice or a reality I could deny.

I was deeply in love with him.

So one day I said, “OK, I guess I am your girlfriend now.”

And he replied, “Yup. You have been for awhile.”

And by the way, it was (and still) is the “ridiculous, screaming-it-from-the-rooftop, having-sex-until-it-almost-kills-you kind of love” I was desperately searching for.

To think I could just date and not fall in love and want to share my life with someone was foolish. But to set out to fall in love and share my life someone seemed selfish. I couldn’t feel so open and in love with the world and also close myself off to all this lovely world has to
offer.

It’s a contradiction my heart wouldn’t allow.

Now I’m being a bad writer since I’ve completely forgotten where I was going with all this.

Kristie Hevener Cross with boyfriend

I’m just thinking about how much I miss my boyfriend, who is out of town right now. I don’t have an end for this story.

Maybe that’s the way it should be….

This post was originally published on Medium.

Thinkstock photo by wuttichok

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