Thread by @JoaquinCastrotx

One year ago today I found out I had cancer.

I was chairing a conference in Bilbao, Spain and was set to fly home early the next morning.

Traveling back to Bilbao on a dark highway, the driver of our car hit a boar going 70mph.

That boar may have saved my life.

After a few minutes an ambulance came and asked if I wanted to go to the hospital. I almost said no but my hand had started to swell and get red. I figured that, on the chance I’d broken a small bone in my hand, I should probably get it checked out. A quick X-ray, I thought. 2/

But as soon I arrived they treated me like a full blown trauma patient. Neck brace, IV, MRI with contrast — all of it.

The doctor said things seemed normal and was just about ready to discharge me. They moved me to another room to take out the IV.

Then the doctor came back. 3/

She took a second to close the curtain surrounding my bed, making sure it was as closed as it could be.

She had been speaking to the nurses in Spanish but shifted gears, struggling to let me know in English.

I’ve never wished I could speak better Spanish than at that moment. 4/

Between two languages I heard —

“My radiologist called me. He said he believes he sees two neuroendocrine tumors that have spread from your small intestine to your liver.

I hate to be the bearer of bad news.”

I asked some questions and then she left.

I never got a bill. 5/

I missed my flight the next morning and instead got home on the Fourth of July.

Before this I’d disliked blood, needles, doctor’s offices and had never been hospitalized for anything.

Over six weeks I’d have enough blood draws, CT scans, PET scans, MRIs, to last a lifetime. 6/

As a legislator I’ve always been supportive of fighting cancer.

But the idea of me getting cancer hadn’t crossed my mind much. When you grow up Hispanic in Texas you’re mostly worried about diabetes.

It turns out that my grandfather, whom I never knew, died of cancer. 7/

I could hardly pronounce “neuroendocrine” tumor, a rare form of cancer, when I got to MD Anderson in mid-July 2022.

But I knew that any tumor spreading across your body isn’t good.

I hadn’t told many people about my diagnosis even as so many things raced through my mind. 8/

My younger daughter turned two months old on the day of my accident.

I wondered how much longer my kids would have their dad around.

Would I see them graduate from high school, get married, have kids of their own? I imagined them years from now, still young, without me. 9/

MD Anderson is part of the Texas Medical Center in Houston, the largest medical complex in the world.

Neuroendocrine tumors #NETs are graded from 1 to 4 depending upon how quickly their cells divide and grow. In other words, how aggressive they are. 1 is slow, 4 is fast. 10/

After a liver biopsy, PET scan and more tests I got good and bad news.

The #NETs were Grade 1, growing slowly and relatively small.

But they had spread from my small intestine to my liver, a bunch of lymph nodes and near my lung.

I had likely had them for several years. 11/

My oncologist put me on a monthly Lanreotide injection, a drug meant to slow, and hopefully freeze the growth of #NETs. It does not, however, shrink them.

Lanreotide is a specialty drug. List price per injection — $24K. The insurance actually pays $6.5K every time I take it. 12/

The insurance company negotiates down with the provider from $24K to $6.5K, covers that, and I pay $60 out of pocket monthly.

But millions of Americans have no insurance at all. Millions more don’t have enough. They can’t afford the treatment they need to fight off cancer! 13/

When I was young I spent countless hours at Robert B. Green, the public hospital, waiting with my grandmother for her diabetes treatments.

Growing up, and later as an adult, there were times I had no health insurance.

Today I pay $1350 a month for my family’s insurance. 14/

Even so, over the past year I’ve probably spent $8K out of pocket. And that’s with great insurance. And it’s only year one.

I keep thinking — what if this had happened when I didn’t have insurance? Or before the ACA - with lifetime caps and pre-existing condition exemptions? 15/

No one should suffer with cancer, diabetes, MS, schizophrenia or any other mental or physical illness just because they can’t afford care.

America needs universal healthcare.

We’re a rich country. To watch our people go bankrupt, suffer or die like this is unconscionable. 16/

In late February, I had major surgery to remove some of the cancer.

The surgeons took pieces of my colon and small intestine, 44 lymph nodes, appendix and gall bladder. But they opted against liver surgery because there are tumors on both sides, making surgery more risky. #17

So, unless something changes, I will have cancer for the rest of my life. I will never get to ring that bell.

But, unless something changes, cancer won’t take my life.

Last month I went back for scans. The remaining tumors haven’t grown.

The Lanreotide is doing its job. 18/

I’m hopeful for @Potus Cancer Moonshot (don’t forget neuroendocrine cancer) and all of the promising research that’s taking place.

Thank you to everyone who’s been so kind to me over the past year - family, friends, strangers. Here’s to many more.

With much love, Joaquin. END