Sarah, United States
After months of pain and obscure symtpoms, I finally learned the cause of my relentless back pain: a tumor pressing on a nerve in my spine.
“Phew, I’m not crazy,” was all I could think.
For six months, I pushed through excruciating pain; I was going to work, driving carpool, shuttling my kids to sports, coaching clients .... before collapsing into bed in silent agony. My primary care doctor’s diagnosis? “You’re moderate to severely depressed,” announced the primary care physician.
No kidding, Sherlock. That happens when you have debilitating pain and no answers. That happens when you cannot walk up the three stairs to your front door. That happens when you can't bend over to hug my 11 and 12 year old boys. That happens . . . when something is really wrong.
Only 8 hours later, as I lay in my new bed in the pediatric ward, a rejection letter was en route to my home for a CT scan that was DENIED. This was a request from my gastroenterologist visit the previous week. The more recent CT in the ER ultimately revealed 20 cm of tumors on my uterus. We later discovered additional tumors on my spine, confirming the inexplicable cancer diagnosis. While I know cancer is common and becoming prevalent in young people, I never thought it would happen to me. It was not on my BINGO card.
What I observed from the healthcare systems during my time in the hospital was disappointing. Despite being in the hospital, where I assume everything would be fast-tracked, we encountered many insurance denials and delays. Meanwhile, a nurse from United Healthcare would call, offering hearts, hugs, and her personal number; there were so many contradictions. Eventually, my case was escalated to a special category at United Healthcare. Yay, right? But it raised questions: Why does it take a life-threatening diagnosis to receive attention?
In 20 days, I had 10 procedures, including a hysterectomy, appendectomy, endoscopy, "the scissor" and two rounds of radiation. United Health began to know my name personally yet even my radiation treatment was initially rejected. One of the tumors was on my spine, touching a nerve. Without immediate care, my doctor warned that I would lose my ability to walk. The gravity of it all was overwhelming and the struggle with insurance was real. I wiggled my toes with a big smile of reassurance when the doctors pushed the paperwork through and the doctors created time and space for my procedures.
Most recently, my husband spent over 18 hours on the phone, picking up the mental load and trying to get a PT/CT scan approved. While the request did not fit neatly into a box, it was absolutely crucial to my care. The doctors explained its urgency. Still, it was denied.
Through all of this, I’ve learned to appreciate the power of a plan. Not because it guarantees certainty—but because it gives you a sense of direction. I began shaping mine around what matters most: small moments like family dinners, big ones like graduation, and centering moments of peace. It’s how I stay grounded.
But this story isn’t about me. So many women—especially moms—possibly you- may not show daily care for yourself, dismiss symptoms, or are dismissed by providers. We settle for vague answers: “It’s probably peri-menopause.” “Try an antidepressant.” We’re grateful it’s not worse... until it is. The truth is: waiting is the enemy. And so many partners face exhaustion and time-loss as they carry out their jobs and carry for their partners.
If something doesn’t feel right—don’t wait. Don’t accept no from the system without a fight. Ask about appeals. Find others walking a similar path. Tap into resources, even if it feels hard. If you have support, use it. If you don’t—ask for help. There are more people willing to help than you think.
It has been exactly one year from my unraveling and I am still here. Let's do this, the world needs us.
Love and Hugs, Sarah.
PS> I switched insurance plans :)
PSS > Just started a Substack on Cancer and Motherhood as "sarita" - I would love and appreciate the support. @sarah402711 - the link is below... sorry looks weird not sure how...
https://substack.com/@sarah402711?utm_campaign=profile&utm_medium=profile-page