The Johns Hopkins Genius

 I’m coming to you live from the third row seating in my mother’s Chevy Tahoe. Suitcases piled behind and next to me, Couraira in her booster seat to the other side of me. 

Exhaustion is mutual between everyone in the car. Last night once we got the girls settled in pajamas Matt and I briefly exchanged the sentiment that we didn’t know what to tell people. All the people asking us “How did it go?” Or “Did you find your miracle?” 

The honest answer is, “No”. Matt didn’t get news of a miracle.

 I went into his appointments with a list of questions. As an advocate you have to prepare. This is when I remind you to utilize the resources we all have access to through the mystical invention known as the internet. Google every single word if you have to. Sources that end in “.edu” and “.org” should be preferred when researching. Once you have your questions, document the answers. Push for details, ask the hard questions and don’t be scared of statistics. The statistical data may sound complicated in the moment so write them down and review it later. Lastly, never be afraid to ask the doctor to document what they’re explaining while they’re explaining it. The oncologist at Johns Hopkins drew me a process flow. Combined with the fact that he was genuinely upset for us, in the moment I could have hugged him. I didn’t hug him though. We’re still in a pandemic and he might’ve thought I was nuts. 

So there wasn’t a miracle in Maryland, but there could be. There was some good news sprinkled over a series of unknowns. The unknowns have the ability to be devastating blows, or bullets we dodged. 

The final oncologist we spoke to at Johns Hopkins, the one I could’ve hugged, struck me as a brilliant mind. He was down to earth and unwavering in his opinion that we had to be aggressive. He said he was going to think outside the box because Matt is so young. He’s insistent that we get a solid plan in place, and he’s calling upon the Johns Hopkins Review Board. They have to asses the facts. 

Matt has new nodules on his lungs, they could be metastases, or they could be inflammatory responses to chemo. Maybe even food he swallowed the wrong way.

He has newly detected fluid in his abdominal cavity, and thickening of the lining. They attribute that to abdominal metastases or possible it could from his surgery or trauma.

Then there’s the blood clot, the one that crushed our original hopes for surgery. Superior imaging determined it may not even be a blood clot. Johns Hopkins surgeons believe a massive lymph node with a tumor on it has compressed the portal vein to the liver. This same lymph node is what may have caused the appearance of a pancreatic tumor. 

Talk about differing opinions and unknowns. 

Both locations of metastases have to be ruled out in order for Matt to make the decision to take on an aggressive and risky plan of action.  The risky plan presented could lead Matt to an insanely major operation involving the colon, liver, and lymph nodes.  

The other option is a long term chemotherapy and immunotherapy. They referred to it as the relay race, to give us the most time with the highest quality of life possible. 

We don’t get to pick the plan. The Johns Hopkins Review Board will determine what the next steps are, and they convene on Tuesday. 

Meanwhile, I’ve watched our wedding trailer four times, looked through photos from some of our best vacations, and cried silently into a box of Cheezits. 

I will do anything for my family, I keep telling Matt we aren’t quitters and we won’t stop fighting. However, to the cancer spouses who may come across this, I have to remind you that it’s okay to let your shoulders sag under the weight of it all.

I know I’m not alone, firstly because there’s six of us in this vehicle. Also because I’ve gotten endless texts asking for updates. 

The real miracle is that Matt is willing  to do whatever it takes to give us the best possible results. And I’ll be by his side with a notebook, a pen and a list of questions and possibilities to suggest.