It’s been a while. We opened a business and that consumed our lives. It was fun. It was difficult. I stopped cooking a lot because of the nightly hours of said business. And now, that business is for sale.

It’s funny how you can be living, surviving, doing all the things we all do on a daily basis. And then BAM, you are hit with news that forever changes everything. That’s what happened to us.

My husband and I were working a lot last summer. We barely saw our kids, but it was ok, we were building something, showing them what hard work was with the hope that all that hard work would pay off.

It’s August, we’re both exhausted, but my husband more so. He has an autoimmune disease, so had some belly pain, too, which we equated to all the long hours and lack of sleep on top of the primary sclerosing cholangitis (PSC). We’ve lived with this for years now, so it’s nothing new.

Only this time, it was something new. The pain didn’t go away. As a matter of fact, it actually got worse. So bad, that he became couch ridden. He couldn’t tolerate laying flat in a bed, so the recliner is where he spent his time. He lost 25 pounds, couldn’t eat, wasn’t sleeping. I kept telling him to go to the doctor, call the doctor, do something. He still refused to believe it was anything other than PSC symptoms until that fateful September day where he finally called. He started with his liver doctor (where he’s seen for the PSC). Liver doctor says it sounds like a bowel obstruction, go directly to your local ER, do not pass go, do not collect $200. While that news wasn’t thrilling, it felt like relief to have an answer and be on the path to feeling better.

We knew our ER doctor from around the community. We were having fun in the ER. Laughing, joking, making the best out of the “shitty” situation if you know what I mean! Husband was taken for a CT to confirm what we were already certain was true – bowel obstruction. He comes back. still laughing, still joking.

We have a bit of time to ourselves before the results come. Husband may have dozed off for a few. I may have looked at Facebook for a few. But then the doctor comes back, and we can tell that something is different. His tone, his facial expressions, his mannerisms. He’s not easy going, fun doctor from our golf leagues last winter. He’s serious. He’s somber. We’re scared.

Bowel obstruction would have been great news. Hell, a lot of other things would have been far superior to the news we received. Although, on that day, we still didn’t know how bad the news was going to be. What we did know was cancer, all over the abdomen, don’t know where it came from and our local hospital was not equipped to figure it out. So, husband was transferred to a larger hospital about an hour away. And that’s where our journey begins.

We are 36 years old. We have 2 young children. We are devastated. We are hopeful. Cancer sucks but it’s cured all the time. He’s young and otherwise healthy. Everything will be just fine. That’s what we keep telling ourselves.

I can’t say that the care we received at the bigger hospital an hour away was anything to write home about. It was sterile. We felt like just another case. Nobody seemed to care about the news we were still reeling from. Our nurse smelled like a damn brewery from her fun the night before. We had to get out of there. They did all the necessary tests and we hightailed it as soon as we could.

We knew there was better out there and we were determined to find it. And we did. We eventually landed at Duke Cancer Center. What I can tell you is those are some of the most amazing people I have ever encountered in my 36 years. I will get to more on that in a later post, should I actually stick to posting again!

For now though, my friends, let me share with you the news we were given in regards to my 36 year old husband with 2 young children and a nearly thriving business.  Cholangiocarcinoma, also known as bile duct cancer, Stage IV, terminal.

TERMINAL. Terminal. terminal.

And that’s why I’m here writing now. I need somewhere to vomit my thoughts. I need somewhere to scream, shout and let it all out. I need somewhere to cry. I need somewhere to laugh. I need somewhere to protest the sheer bull shit of it all. I need somewhere to be where I don’t have to be quite as strong as the front I’m putting on every day.