Lori’s medical travel & bills for rare cancer

Twelve months of non-stop medical self-advocacy and I am exhausted. I’m having a hard time believing that this is really my reality, and that this is really a page created for my own medical care, but here I am. I think deep down, we all think we are immune to having the worst case scenario happen to us. But, my world has drastically changed, and I’m here to remind you that this can happen to any of us.

Hi, my name is Lori Bloom, and my wild medical journey started a little over two years ago with a lump in my neck. What had been pushed off as a swollen lymph node, turned out to be a rare neuroendocrine tumor called a paraganglioma. The tumor was growing not only inbetween my carotid artery but also wrapping around it. This was impacting my blood pressure, and every day life. I had a two part surgery at Northwestern in Chicago. Thsse two surgeries totaled around 12 hours, and came with several hiccups. They removed my main tumor and 5 suspicious lymph nodes. This included a nearly two week hospital stay (ICU), swallowing and feeding issues, and unresolved symptoms. While it seemed as though things had gotten better for a while, my resistant hypertension would start to spike to 200/120, my resting heart rate sat around 100, and my body was in a constant state of fight or flight mode. My chest is often heavy, limbs go numb, and I’ll sweat even in the middle of a literal snow storm outside! Needless to say, I knew something was still wrong. I’ve been trudging down the road of medical self advocacy for the last 12 months trying to figure this out. I was sent from specialist to specialist. We ran every test under the sun, and I even found out that I have renal cancer along the way. I was denied admission to Mayo Clinic in MN. multiple times before finally getting an appointment with the chief of endocrinology. Within moments, he knew what was going on- the lymph nodes that were lighting up as new paraganglioma tumors, coupled with my renal cancer— likely means a genetic mutation on a tiny gene called SDHB. This would be the explaination for rare, reoccurring, tumors on both my neuroendocrine system, and my kidney. While I wait for our genetic testing (which is considered investigative because it’s rare- therefore not covered by insurance- at $2,500 out of pocket upfront), and my most recent MRI scans, I am spending my day riddled with the anxiety of how we are going to afford this financially. Our medical bills from he last two years are already daunting, and the thought of another one or two surgeries out of state this year, on top of a lifelong - incurable- diagnosis (either SDHB- the genetic mutation OR metastatic paraganglioma and renal cancer) are more than I can swallow.

I am a mother of two young children (baseball-mom!). I am an elementary teacher. I’m a community volunteer, mother, and friend. Needless to say, like the rest of us, I am always busy! The stress is already impacting my mental health, and how I am able to be present as a mother, wife, and teacher. The joys of my life.

So, here I am. I’m swallowing my pride, I’m doing what I’d wish my friends or anyone else in my sittuation would do, and I’m asking for help. As a teacher, finances are often tight already. This has definitely pushed us over the edge, and with medical care being across the country, endless medications, and many labs not covered, the bills are adding up quickly. Please share if you’re willing. Thanks for thinking of me and let’s all pray for calming vibes, peace in our hearts, and medical breakthroughs to occur more quickly than my tumors can appear. Xo