fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

Search
Close this search box.

fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

Search
Close this search box.
  1. Home
  2. /
  3. Stories
  4. /
  5. None of My Mom...

None of My Mom Friends Are Dying

Editor’s Note: This piece was awarded an honorable mention in the Pulse writing contest, “On Being Different.”

I’m squarely in the middle of my friends, in terms of when we became “mom friends.” However, one aspect sets me apart: None of my mom friends are dying.

None had excruciating pain during pregnancy, unrelenting constipation or unexplained blood in their stool. None went septic five days postpartum or were ultimately diagnosed with stage IV colon cancer with liver, lung and peritoneal metastases. None are parenting a two-year-old, knowing that they might not see him turn three.

It’s not surprising that I’m unique among my friends in this way. Colorectal cancer (CRC) during pregnancy is rare, occurring in one woman per 50,000. Applying this ratio to the 3,664,292 US births in 2021, I’m one of seventy-three extremely unlucky women. Such cases often involve delayed diagnoses, because CRC symptoms often present when the disease is relatively advanced, and are masked by pregnancy symptoms. Looking back at my pain-filled pregnancy, the clues were there—but no one deciphered them until too late.

I was so excited to become pregnant, determined to stay physically active and continue my usual busy routine as an environmental scientist, hiker and quilter. Unfortunately, my actual experience was very different. By mid-second trimester, I was enduring left-sided abdominal cramping that made even a thirty-minute walk challenging. I was also extremely constipated and had blood in my stool, but my obstetrician explained these as common pregnancy symptoms.

At thirty-two weeks and six days, the cramping suddenly became a sharp, agonizing pain, folding me in half. The next morning, at my thirty-three-week appointment, my obstetrician recommended more stool softeners and told me stories about other patients who’d experienced pain during pregnancy. I remember feeling baffled, and guilty about complaining.

Is this awful pain truly typical third-trimester discomfort? I wondered. Do I just need to be tougher?

That night, the pain became so horrific that I couldn’t stand up. My husband took me to the emergency room. I was checked for premature labor, had normal ultrasounds of my ovaries and left kidney, received fluids and two unhelpful morphine doses and was sent home. With my pain still undiagnosed and untreated, I felt stuck. This had to be wrong, my pregnancy had to be different—but the clinicians I encountered didn’t seem concerned; they were just focused on my baby’s health and apologetic that “pregnancy hurts.”

I had unmanageable, mind-numbing, stabbing pain for my remaining five weeks of pregnancy. Hot baths or numbing my midsection with ice packs provided brief reprieves. The pain often made me curl up on the floor and cry, barely able to think or communicate. I thought about suicide often, wanting to cut my left side out of my body, torn between loving the tiny creature growing in me and wanting to tear him out and scream at him to stop, please stop kicking me. Feeling yet more guilt over those feelings, I hid them from even my closest friends—reminding myself, Don’t complain too much, because everyone hurts during pregnancy. I kept eating healthy, drinking fluids, taking stool softeners and limping to my OB appointments.

Somehow, somehow, I made it to induction at thirty-eight weeks and two days. After delivery, I had less pain, but still enough to impact everything: walking, nursing, chores, sleeping. I’d heard that the postpartum period is hard, so again I thought, I just need to be tougher.

Five days after our son was born, my husband rushed me to the ER. In thirty minutes, I had gone from feeling chilly to shaking so hard that I couldn’t nurse my baby, to being septic, with a 104° fever. I was terrified, certain that I would die. After being stabilized, I spent nine days in the hospital. The hospital was wholly unprepared for an inpatient who was a new mother but not technically “postpartum.” After repeated arguments, I was finally allowed to have my husband and six-day-old baby stay with me.

I told my hospital providers (obstetricians, hospitalists, infectious-disease doctors, etc.) that I still had left-sided abdominal pain and blood in my stool. This elicited little concern, even as my sepsis remained unexplained. My care team seemed not to think beyond obstetric-related causes as they examined an otherwise healthy-looking young woman with a baby latched to her breast and a swollen belly.

On my sixth day there, an infectious-disease nurse practitioner finally found a hard lump in my left abdomen, leading to a diagnosis of a “tubo-ovarian” abscess. A month later, a follow-up CT confirmed a previously discounted connection between the abscess and my colon.

I was admitted to the hospital for a next-day colonoscopy, which revealed a racquetball-sized tumor that had perforated my colon. I now believe that the perforation happened when I was thirty-three weeks pregnant. In retrospect, knowing that colon perforations typically require emergency surgery, I’m horrified and furious when I recall having gone to the ER, only to be sent away–my concerns dismissed, I believe, because I was pregnant.

During this hospital stay, I lost the argument to have my family stay with me. I sobbed as my husband left with our baby—our first separation, hours after my cancer diagnosis. A nurse mentioned that the “few spots” on my liver and the “nodules” on my lungs made the diagnosis more serious, without further explanation. Two days later, when we met with an oncologist, I understood why. I remember sitting next to my husband as he rocked our baby’s car seat, hearing the words “stage IV” and “two-year life expectancy” and shaking my head in utter disbelief.

One week later, we moved across the country to be closer to my parents. The following week, I had colon surgery.

My cancer diagnosis confirmed that my misgivings about my pregnancy had been well founded. Even while berating myself for not being tougher, I was enduring more than should be expected of any woman. Also, my diagnosis meant there would be much more hardship to endure, and many more ways that motherhood would differ from what I’d envisioned. Within the space of six weeks, I gained two drastically different new identities: first-time mom and incurable cancer patient. These roles elicit emotions that run the gamut, from love and joy to sadness, anger and anxiety.

Reflecting on my experiences as a patient, first as a pregnant woman and then as a cancer patient, I mostly feel a deep sense of betrayal and loss. My body betrayed me by letting the cancer take hold and hide behind my pregnancy. My healthcare providers betrayed me by implying that my symptoms and pain were not unusual and by allowing my pregnancy to limit and distort their clinical assessments. I lost my ability to breastfeed for as long as I’d wanted—an aspect of motherhood that I found deeply important and meaningful. I will never regain the physical strength and independence that I should have as a thirty-two-year-old. With ongoing chemotherapy, I continue to lose hours and days I would otherwise spend with my son.

Most importantly, I will ultimately lose the ability to raise my son with my husband—to watch him grow, to support him as he becomes his own person. There is no greater loss.

I’ll never know if an earlier diagnosis would have been possible or could have saved my life. I hope that sharing my story will encourage other women to trust their instincts about their health, and remind medical providers of the risks of anchoring and confirmation biases as they deliver patient care.

Above all, I hope that my story will help even one woman to be no different from all of her mom friends.

Katherine Peter is a thirty-two-year-old mom, wife, military spouse, environmental scientist and stage IV colon-cancer patient. “I grew up in Cleveland, Ohio, and have since lived all over the country for college, grad school and my husband’s Air Force assignments. My favorite place was Tacoma, WA, because of the gorgeous mountains and amazing hiking; it’s also where my husband and I got married. We now live back in Cleveland for my cancer care and to be close to my parents. When I’m not chasing my toddler around (and sometimes while I am!), I love to cook, bake, spend time outdoors, play with my dog and quilt.”

Comments

26 thoughts on “None of My Mom Friends Are Dying”

  1. Women’s complains get frequently ignored, not treated as real, pain not treated adequately. It’s extremely sad that as on OB patient (100% of which are women) you still experience the same.
    I hope you have a great oncologist!

  2. This was almost my story. Instead, my NIPT picked up my circulating tumor DNA from my completely asymptomatic cholangiocarcinoma at age 35. My medical team acted swiftly and referred me to the NIH which is studying the NIPT’s ability to diagnose maternal cancer. They found my stage 2 tumor. I had an abortion to facilitate treatment of an aggressive cancer. Ten years ago the non reportable NIPT would’ve been brushed off as a fluke and I would’ve given birth, my cancer likely only found when widely metastatic as im sure pregnancy and post partum would’ve prevented workup of any symptoms. I share my story widely in medical circles lest people forget pregnant people can be seriously ill.

  3. As has been mentioned in previous comments, this is such a sad situation but indicative of medical practice. When we hear hoofbeats, think horses, not zebras (I assume it is the opposite in Africa). Everything you were told by your providers about pregnancy was correct – pain, constipation, blood in the stools. This is where experience and listening come into play; unfortunately lacking in many residencies and subsequent practices. Nearly everything we do is based somewhat on statistics. As you point out, your cancer is rare, so it will not be the first thing that jumps out as a likely possibility. But it was clear (at least to me, having taken care of obstetric patients for a very long time) that this was not normal pain or bleeding and should have been more thoroughly evaluated. Doing a work-up on a pregnant patient is always possible, but frequently there is reluctance to do it out of fear of fetal effects, radiation, difficulty in doing procedures when everything is distorted by the pregnancy, etc. Since we (the OB) don’t do most of the procedures involved, we have to talk the other specialists into doing them – not always an easy task. Nonetheless, there is no excuse to ignore your clearly not normal symptoms during your pregnancy. I am so sorry for you and your family. I will keep my fingers crossed that treatment results are better than the statistics. I, too, will use your story in my lectures on obstetrical care, as others have mentioned. Good luck from here forward.

  4. How horrible. Somewhere along the course of my medical training 1976-1983 I was told that 95% of the diagnosis is in what the patient tells you.It is true. It is also true that doctors who give patients chances to tell the whole story take up too much time per the health corporations that seem to own us.

  5. You live in Cleveland and I trust you have found good care .I have a young stage 4 cancer patient who was undiagnosed for a long time by the busy primary care HMO office where she never got to see the doctor and was disregarded for years by the mid level staff. She is doing exceptionally well in her care at the U of Chicago and is 7 years post diagnosis. I just saw her for her ” well gyn” exam and had the opportunity to see pictures of the three children I delivered for her.
    Best wishes . Mary Vanko MD Merrillville Indiana

  6. Karen Allinger Coffyn

    Katherine, I am a relative of Alex. I’ve been praying for you ever since I heard, but I’d not known your painful experience until this story was shared. Truly devastating. I am so far from experiencing what you have gone through, are going through, and this is not about me, but to say, it’s been impossible to not think of you with even a stronger reach of blessings since reading your heavy-hearted words. They are prolific and must/will produce change in the healthcare system. I will be spreading them to others who need not accept this level of pain and dismissal. Thank you for giving yourself time to get this out. You are a beautiful writer.

  7. I was moved to tears by your story. As a physician, medical educator and a mom, I am enraged for you and what you endured. I am also praying for you as you continue to move through this immensely challenging journey. Thank you for sharing, such that we can educate the medical community and hopefully save lives.

  8. I am so sorry for the betrayal and losses that you have had and continue to experience. Excruciating pain dismissed, symptoms ignored. New mother with new devastating diagnosis. Who ruptures a colon and has a baby kicking at her abscess and continues to hike? A woman of incredible strength, committed to continuing to experience and live fully in the beauty of life. Thank you for sharing your searing story, allowing your experience to touch and teach others. May the treatments give you time to watch your toddler grow, and continue to live a beautiful life.

  9. I can not even begin to know how this feels to you. I am so very grateful that you shared this story because it is only through human stories that behaviour will change. Yes, common things are common, and practitioners often start there, but we have to learn to really hear when things are NOT improving or need further investigation for those uncommon things. We need to be able to hear when a mother says. “this is DIFFERENT” and believe her and look further. I am so very sorry for your losses (faith, trust, time, family..). I pray your treatments help your pain and provide some meaningful time with your family.

  10. Dr. Louis Verardo

    Ms. Peter, as both a physician and father of a career military officer daughter, I read your piece carefully and with a great deal of emotion. I am so sorry you are dealing with this situation, and to the extent I am able, I promise you that I will incorporate your thoughts on diagnostic issues into any CME activities I deliver as a retired doctor giving presentations to active clinicians. Your story will not be forgotten.

  11. Katherine, thank you so much for sharing this intimate, intensely moving, and instructive essay. Like others, when reading it I was overcome with so much sadness that I wept. Fifty years ago, when I was a medical student one of my mentors talked about the value of inquisitive listening. When taking a patient’s history, he said, one should listen carefully and actively think about what’s unique about this patient’s story, could it be a clue that there’s something else here other than what seems obvious? Your story poignantly illustrates the value of inquisitive listening and the wisdom of my mentor. I plan to share your essay with learners. And I pray for healing and comfort for you and your family.

  12. As a health care provider and a former L&D nurse I am deeply saddened by your story. I wish the providers you saw had looked further and not dismissed your pain. I pray for light and love to cover you and your family. Please let us know how you are doing. You can reach out for a listening ear at ml272@bellsouth.net which is my email address.

  13. Abbey Pachter PhD, RN (retired)

    Katherine,
    Thank-you for bringing us into your story. I see you bravely living each moment you have with your son and husband after tragically being unheard and misdiagnosed. I hear you. May you -and they- have strength.
    In the larger picture, I see what I consider the biggest failure in the medical system: instead of “the old way” of creating a “rule-out” list of possible diagnoses from presenting symptoms, physical exams, and labs so that an accurate diagnosis is revealed, these days the method is to go for the statistically most likely diagnosis first. In many cases, that approach “saves” some diagnostics money, but all too often, the diagnosis is wrong. Clearly, this costs lives. I am incensed.

  14. How many tragic stories do we have to tell before health care providers stop dismissing women’s reported pain? I had hip pain for years but not until multiple myeloma had already caused a 9 cm lytic lesion in my pelvis did anyone admit something was wrong – years after what was probably smoldering myeloma that could have been discovered with a 24 hour urine test. Enough is enough – train providers to listen to their patients and investigate atypical symptoms.

    1. Nancy G Powers, MD

      As @HR Wish illustrates, Katherine, your tragic and beautifully written article goes deeper than “obscured by pregnancy” or failure to diagnose. I am a retired (female, cisgender, white) MD, who worked with many postpartum people and newborns.
      MANY, MANY, Healthcare professionals and workers DISCOUNT the symptoms described to them by women.
      Another related powerful story about this subject is the podcast “The Retrievals,” an investigation by the New York Times. The story delves into the situation at Yale’s fertility clinic where at least 75 women are now involved in a lawsuit regarding untreated pain during egg retrievals.
      Turns out one of the nurses there was pilfering fentanyl for her own addiction and replacing it in the vials with saline.
      The podcast explores many facets of the situation, including, at some length, how women are discounted and how they subsequently tell themselves a story about why “I can’t tolerate pain and other women can,” “ I must be someone who is not affected by fentanyl,” “ I know that injection was not fentanyl, I taste salt” (an MD patient) OR “this doesn’t seem normal, but retrieving these eggs will be worth the excruciating pain.” Meanwhile, the (female) nurses were telling them that the pain is different for everyone or that their experience is common.
      Too bad it’s on us, but WHEN OUR STORY IS DISCOUNTED, we must really, really push the issue in every way we can – and as a retired MD, I plead for this larger issue to be incorporated into medical education and continuing education.
      Katherine, I, too send you strength and light and positive energy. I hope that your course can prove the prognosis totally wrong, like the other young patient referred to by @Mary Frances Vanco, with good years of survival with your family.

  15. A sidebar here: the University of Exeter is running a “Shame in Medicine” project. “Shame in Medicine: The Lost Forest” is an award-winning podcast series that draws on the personal stories of more than 200 health care workers who explore how shame manifests in medicine.

  16. Thank you for your bravery in sharing your story. I hope bravery is your nearest companion as you traverse the next stretch.

  17. This story brought me to tears. I am so very, very sorry for your losses— loss of trust in your providers, loss of joy in pregnancy and new motherhood, loss of precious time and life. Your warnings about the dangers of anchoring and confirmation bias in healthcare are poignantly well made and apply to all specialties. Thank you so much for sharing your story, and know that it has made a difference.

  18. Katherine, the title of your story is perfect. It highlights how alone you have been through your ordeals – dismissed by medical providers and unable to fully belong to and be accompanied in the new mom’s club. This case breaks my heart and should be written up in Obstetric and Emergency professional journals as a cautionary story to all providers who take care of pregnant women. It should also be taught in medical schools everywhere.

    1. Yes, this story should definitely be published in medical journals and
      give out in ObGyn classes in med schools.

  19. Your essay profoundly saddened and angered me. I am so sorry for what you have endured and for your medical prognosis; I pray for a miracle for you. And I am furious at the healthcare providers who dismissed your symptoms without further exploration. May you find the strength to cherish each day, and may you enjoy countless moments of joy with your son, husband, family, and friends.

  20. I cried as I read your beautifully written story. I’m so sorry you had to endure those months of pain, and that it took so long before you got the colonoscopy. Thank you for sharing it. I hope the chemo treatments give you many more years with your son and your husband.
    I also cried because my daughter could have written your story. She too was given a Stage 4 colon cancer diagnosis after giving birth to her baby.

  21. Henry Schneiderman

    This is an exceptionally powerful and painful story, articulated with perfect pitch and unforgettable. Please know how deeply one hopes that your treatment will be both effective and bearable so that you can savor life and your son for a long, long time.

Leave a Comment

Your email address will not be published. Required fields are marked *

Related Stories

Popular Tags