Category: cancer

V Day Blues!

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The funny thing about life changing news is that it changes everything and yet changes nothing at all. Take today for instance, the day of love, the day you’re supposed to surround your loved ones with all the good feelings you feel for them, especially when one of your loved ones is facing his mortality.

I woke up feeling all those lovey feelings. I gave Mr. Wonderful his silly valentine – a Harry Potter puzzle because he’s been really into putting puzzles together lately. I accepted long ago that a romantic he is not and gifts he does not do! (Thank God for my mama showing my boys how to treat the special lady in your life!!) – (SIDE NOTE: I bought myself an Apple Watch for Valentine’s Day – Mr. Wonderful said he would never buy me one because “it’s like a shock collar” but said if I wanted to get if for myself, I could, which I did, so happy love day to me!)

Anywho, wake up, love everyone, give gifts and go about my day getting the boys ready for school, lunch packed, coffee made, everybody dressed, teeth brushed, you know, all those glamorous jobs we do as parents. Mr. Wonderful generally does not get up in the morning, but he had chemo yesterday, and they hop him up on mega doses of steroids for the next few days, so he’s feeling a little more rambunctious and gets out of bed before me this morning. Weird. Slightly irritating.

So, he turns on the TV – a cardinal sin in my house in the morning. My children cannot handle TV in the morning. They turn into brainwashed zombies that can only stare at the magic box of power. Could be a Cialis commercial, could be CSpan, doesn’t matter, it comes on, they are glued. Does not bode well for trying to get out the door on time, which we struggle with on our best days. So I plead, probably more like yell if I’m being honest “Noooooooo, turn that off, no TV in the morning before school!”. He doesn’t turn it off. I’m annoyed. Irritated. But I keep it to myself and go about my morning.

Coffee is made, children are eating, I have gotten dressed (well, threw on some yoga pants and a sweatshirt – that sort of counts as getting dressed because there’s a bra involved) and return to the kitchen to get my morning cup of Joe. To my surprise, the TV has been turned off and Mr. Wonderful is in the kitchen, unloading the dishwasher. Very nice. Now, a large kitchen, I do not have. There is not room for 2 people to really work in it together. So I dart in to get that very necessary cup of coffee, thinking I’ll be quick, he won’t even know I’m there. Well, I should have known better. He did know I was there and he was not happy that I was there. Snarky comments were made. I may have returned said snarky comments. Irritation abounds. Mr. Wonderful shouts he has now emptied the dishwasher “TWICE IN A ROW”. Well hold the fucking phone, honey. I didn’t realize you had done it TWICE IN A ROW. Where is your medal? Where is your ceremony honoring your persistence, your helpfulness, your tenacity? My goodness, twice in a row. Let me roll out the red carpet!!!!!!!! I may have applauded him, slowly, he may have said I was acting like a bitch. It may have been a pretty shitty way to start the day of love.

So, now, here I am, writing this, feeling agitated all over again.

My whole point is, even when you’re hit with some pretty unfathomable, earth-shattering, life changing, kick me in the vagina news, not much really changes. We’re still married. He’s still a pain in the ass sometimes and I’m still a bitch sometimes. I guess we just have to get all of our annoying behaviors out a little faster just to make sure we have the time to get them all in. (That made sense in my head, not sure it does on paper!)

So, as you can see, this writing thing is going to jump around a lot. I will get back to the story of what’s happening, but I needed a little lightness in the dark. Like annoying the shit out of your valentine!

 

The Chaos of it All

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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.