Eric’s Story

Site created on February 6, 2022

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)

Newest Update

Journal entry by Eric Soares

Hey hey everyone! Someone I talked with recently expressed concern regarding the lack of recent updates. I just went and checked and not only was my last update exactly two months ago, but it’d been so long that the Caring Bridge site had logged me out. This person’s concern apparently sprouted from their belief that if I’m not updating that means I have bad news I’m reluctant to share.


Well, rest assured my pessimistic and anonymous friend, and the rest of you, that stability continues. The scan last week showed no growth in any of the lesions, and nothing new anywhere else, so onward we go. It is merely my busy schedule and, ok, some laziness, contributing to your lack of information. But, see, if enough of you ping me directly for updates then I’ll eventually get off my virtual butt, sit on my actual butt, and type out an update. So here we are.


The cancer is stable, my bloodwork is fine, and my side effects continue unabated. The nails continue to be the most impactful. So hurty at times. Other times not so bad. And they are, um, in various stages of disappearing in various ways. I’ll spare you the rest of the details. If you want them (the details not the nails) let me know and I’ll fill you in. Don’t ask for any pics though. Weirdo.


My taste impacts continue to make me the saddest. I think I say this every update but if I could change only one side effect it would be to get my taste back. It’s been hard to narrow down but it seems that the creamy foods are the hardest to perceive now. And Christen has been complaining I’ve been oversalting the meals I make (pfft, whatever). But brighter foods like fruit, etc are still hittin’ pretty hard (whenever I talk like the youths I feel like I sound like my mom used to when she’d swear - enunciating every syllable and basically making it as uncool as possible). Anyway, now that I’ve slowly figured out what hits and what doesn’t, when I took the kids to Fenton’s the other day I got orange sherbert rather than cookies and cream. And, ya know, it was tasty! Sherbert is underrated. I think it gets labeled as a kids flavor because of the whole rainbow sherbet thing, but I had some of Luke’s rainbow sherbert a few months ago and it was, as the kids say, bussin’. Sherbert is lit. However, bubble gum flavor remains disgusting.


My vision is still wonky but the retinal pressure creeps ever closer to my pre-trial baseline (which is good), per my visit last week. I did also go to the regular optometrist last week and there’s nothing borked about my eyes or vision that wasn’t already borked to begin with due to age/genetics/good looks. So I ordered some new glasses to see if they’ll help with working on the computer, as that is by far the most unpleasant. TV - fine. Phone - ok as long as it’s not for too long. Computer - blech.


That’s about it from a trial update. No news is good news I suppose. Onward we go.


What else? Spring has sprung around here, that’s for sure (with apologies to all you allergy sufferers). Green grass, warm temps, and flowers everywhere. Luke and I even planted a cherry tomato plant in the backyard so later this summer my family can enjoy sun-ripened tomatoes straight off the vine while I dry heave in the corner. 


And now we’re already at the end of April meaning only a few weeks remain in Lily’s spring softball season and then it’s just about time for middle school graduation. Good lord. We’re about to have a high schooler in the house (not that we don’t already based on the constant headphone usage, eye rolls, and trails of detritus everywhere). 


Luke is enjoying spring himself as he takes nearly every opportunity he can to zip around on anything with wheels. Skateboard, scooter, bike, whatever. Although whenever we ride around together he’s good for at least one heart-stopping maneuver. How about we brake BEFORE gliding into the cross traffic lane, eh? And do I have to tell you not to crash into the stationary cars? Ah, ok, looks like I do. He is getting a lot better though and is even starting to try some tricks. Just, you know, let’s practice in the park and not in the &%!!@! bike lane.


Alright, that’s enough for now. Stay safe and thanks for all of the continued well wishes, thoughts, and good vibes.

 
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