Eric Soares

First post: Feb 6, 2022 Latest post: Jun 6, 2024
The genesis of this started in early 2021 when Eric started feeling slightly nauseous after eating breakfast. Nothing severe, just light nausea. After experimenting a bit (Is it the first meal of the day? Is it bread?), he noticed it was only when he ate a fried egg on Christen’s homemade sourdough bread. (How pandemic appropriate, right?). A month or two later he ate a hard boiled egg for lunch and noticed the same feeling. Huh, so it’s eggs. Then, he noticed it after eating mayonnaise, peanut butter and some other, but not all, higher fat foods. 

This slight nausea soon included other symptoms like bloating, feeling like he needed to burp but couldn’t, and sharper abdominal pains. These symptoms grew slowly over the months, eventually adding a sharper pain just to the left of his solar plexus. This one was more like a burning sensation. 

On October 12th, Eric went to see his general physician to discuss these abdominal symptoms and some other things. The doctor said they may all be due to “stress” but to try Pepcid for the abdominal symptoms. He also suggested a test for H. Pylori, a bacteria that can cause stomach infections. (This came back negative).

The Pepcid did seem to help the bloating and sharper pains, but not the nausea or the burning spot. Eric messaged his doctor a few weeks after the appointment to let him know some of the symptoms were better but not all, and since the H. Pylori test was negative, what are the next steps? The doctor said that since the Pepcid helped some of the symptoms, Eric should just keep taking the Pepcid once a day.

At this point Eric pushed back and mentioned he did not want to take Pepcid every day for the rest of his life and, since these symptoms had all appeared relatively recently, could he please be referred to a gastroenterologist. His doctor complied and referred him. 

On December 21st, Eric had a video consult with Dr. Cusato, a gastroenterologist. Upon hearing his symptoms, one he mentioned made her think he might have gallstones, so she ordered an ultrasound that was performed on 12/24. As part of that ultrasound they also scan other organs including the liver.

Early January became a journey of increasing concern, starting with Dr. Cusato emailing to say there were no gallstones, following up the next day to say there were some “curious findings of your liver” she wanted to review further with colleagues, and the following day to say there are “concerning lesions in your liver” culminating with her ordering a CT scan.

Now the concern was real. Early the next week, Dr. Cusato emailed to say the CT scan showed the lesions are cancerous and there looks like some in the adjacent lymph nodes, but that it wasn’t clear where the cancer is coming from. This is because:
1. It’s atypical for cancer in the liver to not have moved from somewhere else, and 
2. The lungs and rest of the body cavity were clear.

Thus started a cascade of medical tests over the next 3 weeks including a liver biopsy, upper endoscopy and colonoscopy and a whole panel of blood work with none of these tests showing cancer anywhere else in the body. 

On January 26th the pathology report came back, and Dr. Cusato emailed to say, “The liver tumor seems to be consistent with a type of tumor called a cholangiocarcinoma which is a primary liver cancer,” and that she would be referring Eric to an oncologist.

The 5 intervening days between that email and the Jan 31st appointment with the oncologist were a continuous battle of will to not google that particular type of cancer. Because, as everyone knows, interactions with WebMD typically go like this:
  Me: I have the sniffles.
  WebMD: How are you not already dead? Regardless, you will be dead in 2 days.

January 31st we met with Dr. Steve Lee, an oncologist at Kaiser Oakland, who confirmed the diagnosis, gave more details, and laid out a plan of treatment.

So that’s where we are. It's been a heck of a month. We've gone from "Let's investigate some GI issues" to "Stage 3 liver cancer" in about a month.

On Feb 11th Eric starts a treatment plan based on some promising new results recently released of the Topaz-1 study: https://www.ajmc.com/view/topaz-1-phase-3-study-finds-durvalumab-in-biliary-tract-cancer-significantly-improves-os-pfs-compared-with-chemo-alone
This involves a 3 week cycle of chemo and immunotherapy. There have been many recent positive developments in treating cancer with immunotherapy.

One lesson we want everyone to take away is to advocate for yourselves. We shudder to think where Eric would be had he not asked for the referral to the gastroenterologist. Even today his symptoms are mild. He is avoiding eggs and mayonnaise and other foods that trigger his mild nausea. He takes Pepcid once or twice a week when the other symptoms appear. But other than that he feels just fine. What if he hadn’t asked for the gastroenterologist referral? What would it have taken to get him to see the doctor again, and what would the prognosis have been at that point? Please, everyone, advocate for yourselves.

Despite the challenges there are many things we are grateful for:
1. Our families, who have been rock solid, just like they always are. Beyond grateful to have been born into and married into such amazing families.
2. Eric’s employer Salesforce has been amazing so far in this experience. They are beyond generous with offering encouragement, time away to manage the complexities of this situation, and facilitating medical connections and support.
3. Health insurance, relative financial security, and so much more. 
 
But most highly, we are beyond grateful, amazed, and humbled by the outpouring of love and support we’ve received from so many people and places. You all are beyond words and we can’t thank you enough.

This looks like it’s going to be a long battle, so we will no doubt lean on many people in the near or distant future, so don’t burn yourselves out. :)

For now, we are staying positive, hopeful, and will take any thoughts, prayers, and positive vibes you want to send our way or out into the universe. 

Sincerely,

Eric, Christen, Lily & Luke (Cocoa & Latte too)
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