I Came Home Still Hurting

This morning was one of those moments where the reality of all of this hit me in a completely different way.

The cancerous lymph node in my neck has become more swollen, more rigid, and significantly more painful. My regular 5 mg oxycodone was barely touching it, and after speaking with triage, I was told I needed to be evaluated today rather than wait for my oncology appointment on Monday.

So I went to the emergency room because I was in acute pain and scared by how much the node had changed.

What I needed was pain control and reassurance that someone was taking what was happening seriously. Instead, I was told that because I already have a pain-management doctor, they could not give me anything more for the pain or prescribe anything to help me through the weekend.

At one point, while I was trying to explain how frightening the swelling and pain felt, the PA told me, "It's just the disease process. Don't be scared."

I know that may have been intended to reassure me, but it landed in a way I don't think I can fully explain.

Because the "disease process" is cancer.

I am scared.

And I was not there because I needed someone to tell me not to be scared. I was there because I was hurting badly enough that the medication I already had was not working, and I had been instructed to seek care.

I came home still hurting.

There is something incredibly lonely about being newly diagnosed with cancer and already feeling like you have to fight this hard just to get basic comfort and guidance. So much of this experience so far has involved waiting, calling, being referred somewhere else, or being told to wait for another appointment while my body keeps changing in ways I cannot control.

I hate admitting this, but there are moments when I find myself wondering whether being poor, disabled, chronically ill, and already under pain management changes the way people see me when I walk into a hospital. Whether I am seen first as a complicated patient, or someone asking for pain medication, instead of a frightened person who just found out she has metastatic cancer.

I don't know if that is what happened today. I don't want to put intentions onto anyone that I cannot know. I only know what it felt like.

It felt dismissive. It felt lonely. And honestly, it felt profoundly sad.

I am still waiting for Monday's oncology appointment, still hoping that once I have an actual cancer team there will be more direction, better symptom management, and someone helping coordinate all of this.

For now, I am home, trying to manage the pain with what I have available in my "toolbox," and of course get through another weekend of uncertainty.

So far, this support page has been very quiet, and that has been difficult too. I know everyone has their own lives, their own struggles, and their own limits. But if you are able to share this page, follow our updates, or help in any way, it truly matters. Even $5 or $10 helps more than you might realize when we are trying to absorb extra gas, parking, food, medical, and everyday expenses all at once.

Right now we are still trying to navigate the medical, emotional, and financial weight of all of this mostly on our own, and every bit of visibility or support helps.
💜💜💜