ATWT Marnie baby

Ash V Photography

On the eve of my 36th birthday, instead of searching for a place to drink multiple Bloody Marys (my birthdays always involve Bloody Marys, boats and lobster, not in any particular order), I was repeating the same question over and over again in my head: “How does one celebrate a birthday with a new baby in the middle of a global pandemic while coming to terms with a Stage IV, metastatic, borderline triple negative inflammatory breast cancer diagnosis?” Each irrevocable life change was trumping the next and leaving me in what I can only assume is the Upside Down from Stranger Things

Agim Kaba, Marnie Schulenburg"As The World Turns" Set Location Clinton, New Jersey 8/7/08 ©George De Sota/jpistudios.com 310-657-9661 Episode # 13350 air date 9/10/08

During her stint on As The World Turns, Schulenburg’s Alison Stewart wed Aaron Snyder (Agim Kaba).Joining the show in 2006, she would play the part until it’s cancellation in 2010.

I have two tits, a partnership that was seemingly innocuous until recently. They’ve always been good to me; big for my size, hearty, veiny, for the most part stayed in line and didn’t detract too much attention from, say, my face, or more importantly, my mind. As an actress, your outward appearance is part of your brand, the product you’re selling so being well-endowed was helpful in that regard. As a new mother, I went up an entire bra size due to hormonal and lactational changes preparing my body to feed my newborn in the most natural and necessary way, breastfeeding. It is an actual scientific miracle, the conversation that exists between a mother’s breast and their child, if it’s in the cards and works for you. However my first real introduction to breastfeeding involved my husband twisting one nipple as if it was taffy that would only intensify in gooey flavor the more he twisted, while Linda the Lactation Consultant (totally not her name) grinded the left nipple until it bled while both my newborn and I cried, wondering, “Is this breastfeeding???!!! And why didn’t we opt for the private hospital room???” I felt like a NASCAR pit crew had come to work me [over] and all in the name of Liquid Gold, or Colostrum, the first form of milk essential to a newborn’s development.

After you push a literal watermelon out of your vagina, the physiological changes and trauma that occur are so vast and intense, it’s only normal to think that anything out of the ordinary would be due to the fact that you just pushed a watermelon out of your vagina and are now somehow feeding it with your body! So when my left nipple looked a little inverted compared to my right a couple of weeks later, I didn’t think much of it. Nor did I think much of the fact that ol’ Lefty was a bit firmer, red and less flexible than Righty. My daughter preferred Lefty; it was definitely getting a lot more action, felt fuller and as a first-time mother, I had nothing to compare it to. It also hurt sometimes when she nursed, but again, I chalked this all up to the residual trauma from the NASCAR pit crew at the hospital, and a lactation consultant friend confirmed that all of this was pretty typical and that it might just be a clogged milk duct. Finally, I also experienced a couple of nights early on when I awoke to shooting pain in my chest, but this seemed to be in line with engorgement. None of these symptoms seemed out of the ordinary enough to even mention at my six-week check-up with my OB/GYN. And see now this is the most insidious part of inflammatory breast cancer that I had yet to be acquainted with. 

Inflammatory breast cancer showcases itself similarly with several different side effects and/or infections that could affect a nursing mother. Whether you’re newly breastfeeding or trying to wean, clogged milk ducts, engorgement and breastfeeding infections can be very common. Specifically, mastitis, a breastfeeding infection that usually occurs within the first three months of motherhood, check! Symptoms include pain while breastfeeding, check! Warm and tender to touch, check! Breast swelling, redness and thickening of the breast tissue, check, check, check!!! However, when my milk supply in Lefty became affected, and I couldn’t fully lie down anymore on my stomach due to the thickening of the breast,  I was over it. I messaged my OB/GYN to set up an emergency appointment. All this progressed and intensified in a matter of three weeks. It went from not even being notable enough to bring up at my six-week check-up due to the commonalities with normal breastfeeding issues to full-blown five-alarm panic in only three weeks. That’s because inflammatory breast cancer is known for being particularly aggressive with symptoms developing between three to six months with still no clear answers as to why. And what was the most devastating to me was that my daughter had pulled away from Lefty like it had a bad taste and refused to nurse on it.

I felt like I had utterly failed at the one thing a mother was supposed to be able to do for her child. The rejection was heartbreaking for me. I didn’t know that there is the belief that cancer affects the way your breast milk tastes leading your child to no longer wanting it. I didn’t know that there was something poisoning me even though my daughter did. I just felt like a failure, and the devastation was all-consuming. 

Marnie Schulenburg Personal photos

Now, I just want to take this moment to say that I am a proud Googler. I am one of those review-reading junkies who will research something until it’s no longer for sale, but the week of my first ultrasound scan was the exception. My husband was away for a shoot so I was solo parenting overnight for the first time. I was on hold for a possible gig that would shoot in Atlanta two days from when I was supposed to get the ultrasound/mammogram smartly ordered by my OB/GYN because she had no idea what it could be after our follow-up at the end of February. The NBA had officially shut down, shelter in place was mandated the night of my appointment, and Tom Hanks had tested positive for Covid-19. [Bleep] was getting real. 

I say all this more for myself than anyone else because the actions I took leading up to and on March 9th still haunt me to this day. Why didn’t I remember to bring my small portable breast pump? My husband drove me in to avoid the subway, and I assumed it would be quick. Plus, my daughter was in the car and I could easily feed her. But then why didn’t I push harder to have the mammogram when they told me I couldn’t because I didn’t bring my pump and therefore my breast milk would affect the scan’s efficacy and also “make a mess”? Why is this not something that is mentioned before arriving for the scan itself? When I later had an MRI, the scheduling office followed up with a call saying that if you are a menstruating woman, then you should reschedule your appointment. Why is the same courtesy reminder not offered for lactating women coming in for an ultrasound or mammogram? I explained that I had just pumped and my daughter was in the car, but the scheduling staff had a full room, it was now or never, and I certainly didn’t want to spend any more time in that waiting room. Who knew a global pandemic was on the precipice of changing our lives forever as we knew them? 

Marnie Schulenburg personal photos

If I had googled it more, then I would’ve found out that due to the dense breast tissue found in women under 40, specifically that of lactating mothers, that ultrasound and mammogram scans are not a foolproof way to diagnose, anyway, but that it’s imperative to completely empty the breast pre-scan. But the radiologist who diagnosed me — I was one in a handful of women she had diagnosed in the last 15 years on the job — said that her staff knows what to do with a postpartum woman to get the clearest scan possible but also confirmed that it’s not foolproof. Best study for young, dense breasts in high-risk women is an MRI, but it is expensive, thus often declined by insurance and not helpful in breastfeeding women. The whole breast takes up contrast because of the lactational changes. For breastfeeding women, the clearest way to identify if no large mass is seen and the infection does not clear up is with a biopsy. However, in my case, IBC is rare and particularly rare during pregnancy or postpartum, so it was assumed on the spot and confirmed a week later that what I had was clearly a stubborn case of mastitis. Why do people default to mastitis versus inflammatory breast cancer? When something is as common as mastitis, it is the first thing on a differential. In my particular case, there is also a huge possibility that I had mastitis in addition to cancer since the thickening of the skin was stopping the milk flow, causing it to back up and become an infection. I went home thinking mastitis is what I had and I happily took those antibiotics expecting it to resolve itself within the week.

It didn’t. 

The first round lasted 10 days, and on the 10th day, I saw some change, so I pushed my OB/GYN to let me try another, stronger antibiotic and let it run the full course versus stopping it when I didn’t see any change after 72 hours. She said usually these infections clear up within that time, but it isn’t a given, and my dear friend the Google machine confirmed that. She referred me to a breastfeeding doctor who gave me a final course of antibiotics, a nipple cream and cabbage. Yes, cabbage! The stuff of coleslaw has amazing anti-inflammatory properties and relieves pain from engorgement so that it is easier to empty your breasts — plus, tastes great in tacos! By the time we decided another ultrasound was necessary, I had spoken with two lactational consultants, an occupational therapist, my OB/GYN and a breastfeeding doctor, none of whom ever uttered the word cancer. I sent so many pictures of my infected breast to complete strangers that I’m pretty sure when you Google me, it’s the second result after my headshot. And over half of these visits had been televisits due to the pandemic, so of course, the quality and accuracy of care had to be affected by this. 

More: Marnie and her husband share their story

I get hung up on this amount of time wasted the most. Why did I push to have all three antibiotics run their full course? That was five weeks I lost there, but when they didn’t work returning for additional evaluation was appropriate. To help ease my guilt over this loss of time, my radiologist friend said that clinicians will often give a second or third course of antibiotics before looking for another diagnosis. It is very appropriate not to have been reimaged for six to eight weeks, because you want to wait and see for the resolution of the nodes and mastitis. I lasted until one early 4 a.m. wake-up call with my daughter that led me to almost pass out from the pain  I was profusely sweating, had a shooting migraine and the back pain both my husband and I had been suffering from — you try bouncing a baby to sleep in your arms on an abs ball multiple times a day and see if you don’t have back pain — reached its breaking point, literally. I could no longer go on like this. ’Round-the-clock pumping to ensure my baby had her daily fill of my breast milk, all primarily coming from workhorse Righty, while infected Lefty was burning from my daily deep-tissue massages — and none of that soft Swedish massage bullcrap in my house! Oooh no, I was kneading that thing into thin-crust pizza dough — had to stop. Turns out giving your breast with inflammatory breast cancer a daily deep-tissue massage only inflamed it more. Who would’ve thought??!! I was exhausted, depleted, in pain, obsessed, desperate, frustrated and knew something was seriously wrong. 

On May 4th, I marched into that same imaging office I had been to not two months prior to what would be one of many essentially empty waiting rooms. The majority of sane humans were avoiding hospitals at all costs if they were lucky enough to have that option. I was running towards it. I went in for my follow-up ultrasound scan, masked, gloved up, and I brought that mutha[bleeping] pump. You know that tone an adult would take with you as a child when they wanted you to fess up to something on your own? Like you knew you were in trouble so you might as well come clean with it now since it would only be worse if you didn’t tell the truth? That’s the tone my now radiologist friend spoke to me with while examining me and asked, “So Marnie… tell me your story,” and I just knew we were heading towards the land of the unspeakable.

She took me into a small room afterwards, and as I was about to sit, someone hurriedly brought in tissues, then scuttled out. She starts showing me grainy images of static television and says the word calcification over and over again and that I need to come back in for an immediate follow-up. She anxiously asks the scheduler to get me back in ASAP because I am Code Crazytown (okay it wasn’t Crazytown, but I had blacked out at that point and forget the term now). It was so surreal, it felt like one of those audition scenes I always forced tears in, and now that I was living it, I didn’t want to cry, I wanted to laugh! Here I was finally getting some answers, and once again, no one would actually say the one word I had been waiting to hear. Cancer — you have cancer.

At that point, my now frenemy Google had alerted me to the fact that when mastitis won’t go away after antibiotics, it could be a sign of cancer. I had to bully it out of her, and she begrudgingly said it looks like early stages of breast cancer. May 6th, I had my follow-up mammogram, and we biopsied three separate spots on Lefty. May 8th, after speaking with the breastfeeding specialist I had been seeing, she assured me that in the 20 years she had been doing this, it was never cancer. We clung to this like it was our last hope, which it was, and I ignored the radiologist and even dubbed her Sad Panda because I didn’t want to believe that it took over three months of seeing healthcare professionals to tell me this. To put my mind at ease, the breastfeeding doc called the imaging center to see if she could get any clarification for me. Ten minutes later, she calls me and it sounds like she is literally running through the trees, Blair Witch style, telling me that it is indeed cancer, that she is so incredibly sorry, and I think this is the moment that I’m introduced to the unlikely partnership of relief and fear; a common duality that will be with me for the rest of my life. 

Finally. I finally had confirmation that what was happening to me was not normal, that it wasn’t something I had done or missed and, in fact, my tenacity and inability to let it go/willingness to send way too many photos of my breast to people are the only reasons I got a diagnosis when I did! The timeline from when I began to notice symptoms to my official diagnosis was a little over three months, the majority of it spent during an unprecedented global pandemic and the fourth month sleep regression of an infant. Finally some answers and finally some relief but also “[Bleep], am I dying??” How can there be such a fine line between life and death? What kind of sick purveyor of my fate finally gave me the gift to create and bring life into this world, only to have mine taken in its place? No parent should ever have to bury their child and no child a parent, especially before they even get the chance to know them in any real and fundamental way. 

On May 18th, I had one punch biopsy (just a lil’ hole punch of my skin) to confirm that it was indeed inflammatory breast cancer, a rare form of breast cancer that accounts for 1-5 percent of all breast cancers diagnosed in the United States. It is not commonly picked up by a mammogram and rarely accompanied by a lump. That day, I gave almost 16 vials of blood, met with four different doctors, was examined to see if I could indeed harvest my embryos so my husband and I could consider the possibility of more children, was informed on how to do so before chemo began, only to be told at my sixth and final appointment of the day that we didn’t have time for that. That the narrative of our lives as knew it would never be the same. That the dream of giving our daughter siblings to love like we had growing up was no longer an option. That I should focus on and be grateful for the baby that I do have. That my “early signs” of breast cancer were at the earliest, Stage III due to the fact that inflammatory breast cancer invades the lymphatic system and blocks lymph vessels in the skin. That I was borderline triple negative, the most aggressive and hardest-to-treat type of tumors. That there was a pleural effusion in my lungs, or fluid (hence the early-on chest pain, a precursor to cancer). That it was definitely in my sternum, most likely my pelvis, but that all needed to be confirmed with a fun little future Friday bone biopsy, where I spent the morning ass up while a sweaty, young thirtysomething resident drilled into my bone. It was a [bleep]tastic [bleep] sandwich of a diagnosis in the middle of a dumpster fire of a year, and that was when my stoic little New England heart could take no more. In that sixth and final appointment for the day, unable to have anyone by my side due to Covid, and unable to even be comforted by my oncologist, I cried and asked, “What do I tell my husband, and how long do I have?“

Marnie Schulenburg

We’ve come a long way since that dark day. We felt underwater for a while, and then we shared our news with our families and community, who breathed fresh air back into our lungs. They gave us support, love, food, gifts, words of hope, comfort and kindness. I educated myself on the disease and found an incredible network of women through a Facebook support group that is in conjunction with the IBC Network Foundation and MD Anderson, one of the top hospitals focused on IBC care. I realized that there is a large community of metastatic inflammatory breast cancer survivors whose journeys have spanned years and even decades. That it is not a death sentence. That there is always hope. That there are treatments that exist today that didn’t even a year ago. That if I can survive navigating raising a newborn amidst a global pandemic with civil unrest and social injustice permeating our daily existence, that maybe I can survive a cancer diagnosis.

Marnie Schulenburg

I entered into my first day of chemo the day after protests erupted into the streets of more than 140 cities after the murder of George Floyd, just after the peak of Covid cases, knowing that I was privileged to have the option of safe healthcare at my fingertips. We’ve recently heard terms like “best case scenario,” “very little to no cancer left,” “super responder,“ and we take two steps forward, only to hear “An atypical rash has appeared again, and you now have diabetes, a side effect that affects only 1 percent of people on the immunotherapy drug that you are on,”  and we take one step back. I am the 1 percent of the 1 percent, or as my amazing chemotherapy nurse has dubbed me, “You’re the Swiss cheese!” It’s very rare for the holes in Swiss cheese to line up perfectly, but when they do, things can fall through those cracks just like my case did. I am what the medical community calls the Swiss cheese. 

So instead of drinking Bloody Marys and eating lobster on a boat somewhere, I spent my Birthday asking, “Why me?“ on a loop, crying on my baby, dreaming of being able to walk her to the bus for her first day of school. What brought me out of the Upside Down was hope gifted to me by a group of dear friends and Sean Astin. I was given a cameo of Sean Astin — or as I know him, Samwise Gamgee. He reminded me of this quote from The Lord of the Rings trilogy: “It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger they were, and sometimes you didn’t want to know the end, because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines, it will shine out the clearer. Those were the stories that stayed with you, that meant something. Even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folks in those stories had lots of chances of turning back, only they didn’t. They kept going, because they were holding on to something… That there’s some good in this world, Mr. Frodo. And it’s worth fighting for.”

Marnie Schulenburg

There is so much good worth fighting for, and I get a front-row seat to it every morning when I see my daughter. Everyone has their own shadows to bear; mine is cancer, but each day is a new day with a new dawn that I am alive for and that is worth fighting tooth and nail for.