One Month Down, The Rest of Our Lives To Go

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Today marks one month since Ash’s death. It’s been an incredibly long, yet incredibly short month. My boys and I are still standing. Thing 1 just got straight A’s on his last interim report, Thing 2 just sang “Jingle Bells” in his preschool Christmas program. Life goes on. I’m proud that my boys are still thriving. They’re surrounded by great family and friends to help navigate them through these rough waters so to speak (Jesus, I’m getting metaphor-ey – can’t be a good sign of things to come!)

I didn’t realize how hard today was going to be. I feel sad, tired and way older than my 37 years. Yesterday I wrote about how strong I am. Today I feel the complete opposite of that. I cried in the elementary school. I teared up at the preschool Christmas program. I’m crying sitting here thinking how tired I am. Selfish cow – present!

Here’s what I have done in the last month:

Cried.

Laughed.

Yelled. Mostly at my dogs and children.

Apologized. Mostly to my children for all the said yelling.

Drank too much.

Eaten too much.

Gone out with friends.

Got a fence.

Got new blinds.

Replaced my bedding.

Booked a trip to Disney. And Universal Studios. (don’t tell my kids)

Cleaned up limitless amounts of dog piss in my carpet. (Someone, for the love of me or God or dog, take this damn puppy – I’m kidding – sort of.)

I’ve questioned life.

I’ve questioned God.

I’ve questioned Ash.

I’ve cursed even more than usual. Which is a lot. Like a lot a lot.

We saw Santa. (Colt doesn’t want socks if you were wondering)

We watched a parade. (you know the one)

I’ve lost 4 pounds (only 104 more to go!)

I started doing yoga daily.

I started jogging (less often than daily).

I’ve talked to friends.

We’ve visited with family.

We put a puzzle together.

We endured our first holiday.

We’ve done countless, meaningless tasks every single day for the last month.

Life has gone on. It didn’t stop for our broken hearts. It just keeps on keeping on. And we’re keeping up. But today, I don’t feel like keeping up. I feel like curling up on my couch with a warm blanket and hugging my babies tight and crying until my eyes hurt. But that’s not possible either because have 2 basketball practices and Christmas programs and haircuts. Because life goes on. Whether we want it to or not. Whether we’re ready for it to or not. Life goes on.

Unexpected Breakdowns

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I’m going to toot my own horn for a minute. Don’t worry, it’s not something I do often (unless of course I’ve been sipping on the Tito’s for a while and I promise I haven’t been this morning), but today I feel like it. So I am.

We were dealt a life changing hand September 2018, obviously, or I wouldn’t be writing this. I would say for the first 2 weeks, I was a crumbling mess of tears, nerves and anxiety. But then I put my girl panties on (literally because eating was my coping mechanism and I needed the big girl ones to fit around my fat ass), raised my tits up (thank you Mrs. Maisel) and I dealt with it. I found my inner strength (and maybe Xanax) and we continued to live. We lived the shit out of the last year.

Ash and Jack went to a World Series game in LA thanks to some very dear friends. Jack got to play baseball with Duke’s baseball team. Some of Ash’s best friends from high school came to see us. We went to Jamaica for Christmas. We took Colt to Target for hours one day and let him shop the hell out of it. Ash even bought him some random junk, which was very unlike him! We sold a business. We went to Houston, Ft. Worth, Salado and Austin, TX. Both boys rode a horse. Ash shot guns at cacti. We played countless rounds of family golf! Ash and I went to Durango, CO where we took very short hikes and cried too many tears. We went to another World Series game thanks to an awesome brother in law (and our very favorite Washington Nationals won the whole thing! Like, whoa! Divine intervention. Me thinks so!).

You get the point. We lived. We held our heads high. We did not break down in public. To look at us, you would never know what we were living with day in and day out. Even our closest friends were always shocked when Ash couldn’t come some place, or didn’t feel well or found out he threw up several times a day every day but still pushed through and LIVED. He is for sure my hero (that wasn’t always true and those that know me, know why, how, when, etc.). He was so brave through this fight though.

But guess what? So was I. (Told you I was going to toot my own horn.) Some days were worse than others but for the most part, I was dressed, my makeup was done, my hair looked decent and I was mostly friendly (other than at preschool, something about chipper, bright eyed and bushy-tailed preschool moms made me want to crawl in a hole and never come out, sorry ladies!) I went out with friends, I laughed, I made inappropriate jokes about our situation, took my kids to do fun things, took care of Ash. I can’t take all the credit of course. We have one hell of a support system around here, family, friends and even strangers. But dammit, I was strong. I am strong.

Now you’re wondering where the hell are you going with this, Kellie?!?

So here goes. Saturday, you heard about Saturday. I was an angry elf. And then I was a teary elf. I got the sympathy cards. I had the breakdown. I ended up letting the boys sleep in my bed (not my favorite thing in the whole wide world if you wanted to know.) I stayed up too late bingeing The Marvelous Mrs. Maisel (best show ever, go watch it!). At one point, I needed to take a trip to the little girls room, somebody (ie the young boys that I don’t necessarily want sleeping in my bed) used the last of the toilet paper so I opened the cabinet above the toilet to find some more. Nothing strange there, except that it was. My husband’s side still had all his things. Deodorant, cologne that he never wore, some medications, shaving cream, razors, all the normal things a man would have for the bathroom.

And I just lost it. Out of nowhere. Unexpectedly. I crumpled to the floor in a heap and just sobbed. And I thought of all the reasons I was angry at him. He left me. He left the boys. He left the dogs. We had a rule, no more children than there are adults and now there’s only 1 adult, 2 children and 2 dogs. He broke the rule. And I am so mad. He never cleaned up his messes. He was always critical. He never liked my ideas. Until he did, because my ideas are mostly awesome! (haha!). He didn’t clean the garage. He left me in this house where now 2 Jones men have died. And I wanted to write it all down. I wanted to write him a letter and give him a piece of my mind. Tell him all the ways he’s pissed me off. But I couldn’t do that, could I? Because he left me. And our boys. And I know it wasn’t his choice but it doesn’t stop the anger. Or the unexpected breakdowns. Like opening the bathroom cabinet.

Yesterday I started cleaning out the garage. My dad’s boss let me borrow his dump trailer. My husband is a bit of a pack rat. He never throws anything away. Why throw it away when we can just lose it in a heaping pile of other junky shit in the garage. So it was a big task. My brother and mother helped because they are angels on Earth! But I found something again. Another letter. (also $25 in Canadian money so I’m probably a little rich now). It was a letter from Ash and my boys for Mother’s Day and it was just thanking me. Thanking me for “all you do for us everyday: laundry, dinner, groceries, special sandwiches!, coffee, paying all our bills on time so we don’t go to jail!!!!, letting us know when we need to go sit on the stairs, keeping our daily schedule intact, always showing us love and patience (okay that isn’t even possible) – but you are always there when we need you, when no one else will do.” It goes on to say other many nice things, and while it brought tears to my eyes (Ash didn’t do nice, really – unfortunate that my love language is words of affirmation. His wasn’t! Makes me laugh now – we somehow made it work, though), it also dissipated some of my anger with him. Had he been given a choice, he never would have chosen cancer and living our entire life in one year and leaving when everything was so good. The last sentence of this letter that I found is “God put us together for a reason and he made you a mother for a reason.”

I sure wish I knew the reason why He didn’t keep us together for longer. More unexpected breakdowns are in my future, but for the most part (other than in writing), you won’t see them. You will see me smile and laugh and make inappropriate jokes.

Hello, My Name is Kellie and I’m an Angry Elf

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One of the grief processes – anger. I have it in spades. I never know what’s going to set it off. Could be one of my children scraped his nerf gun against my wall for the 3,257,851st time in a 5 minute period. Could be the new puppy my children just had to have pissed on the floor yet again because she doesn’t understand going outside and I’m not sure she ever will. Could be that my underwear is on inside out. Which it is. Right now. Because that’s my life now.

It’s funny. But it’s also making me cry. Today is one of those days where I’m teetering between punching everyone I see in the throat and just crying my eyes out for no good reason. (I have not yet tried the aforementioned throat punching, but I have tried the latter and it’s scaring my children). I guess there’s a good reason for it. I’m 37. I have 2 children. It’s almost Christmas. And I’m a widow.

I took my children to a Christmas parade this morning. It was freezing. It was windy. I didn’t want to be there but the boys did, so I made it happen. 2 of their friends met them there. They are 4 boys 10 and under. To say they have a lot of energy is the understatement of a lifetime. Candy is being thrown at them. They are of course aggressively attacking like Darth Maul with his double light saber at every Dum Dum and Tootsie Roll being tossed their way. Have I mentioned it’s a parade? And parades are crowded if you didn’t know. In my mind, parades are for children. I mean, they’re throwing candy. If I want candy 1. It sure as hell ain’t Dum Dum’s and peppermints and b. I can damn well buy my own candy whenever I want. It’s one of the perks of being an adult.

Well, I’m standing back behind the boys out of the line of fire, and a family comes and stands directly in front of me with very young children. They squeeze in right by the line of boys with their metaphorical double light sabers and one of my boys accidentally bumps into this new family’s little girl. Mama Bear said words to my son. Then my other boy stepped on the precious little girl’s foot. Mama Bear says words to my other son. And it is at this precise moment that I realize I am exactly where I don’t need to be. Anger was becoming my new best friend. We were ready to hold hands and skip our throat punch fists right into Mama Bear’s thick and pasty neck. Does she know what my boys are going through? Does she know that it’s Christmas and that those 2 rambunctious, candy chasing boys are actually showing some joy on their faces because of this cheap ass Dollar Tree candy? Does she know they lost their father less than a month ago? Does she know that her family cut right in on my boys’ space and then proceeded to get angry when my boys used said space?

No, she doesn’t know any of this, so me and my new best friend put our fist away.

Then we move on to Winter Wonderland at one of the local school’s. Santa is going to be there. Bounce houses. Food trucks. Crafts. All sorts of the shit that makes me drag my feet and prepare my fist. But again, my boys come first, and they wanted to go. So go we did. And I think they had fun. However, I only let their fun last for just the tiniest little bit. My poor 5 year old, passive, sweet, wonderfully weird boy that he is, got cut in front of, he got booted out of his games in the middle of them, he got pushed out the way, he got balls taken from him while it was still his turn. Again, not the place for me to be today. I can feel my best friend’s heat rising up my face to the tips of my ears. We left immediately. We didn’t see Santa. We didn’t eat lunch. We didn’t craft. We just got the hell out of there.

When we got home, I checked the mail, as one does when they get home for the day. It’s been a while since I’ve gotten a sympathy card in the mail. Today I got 3. One of them was from Ash’s oncology team at Duke. All the anger dissipated and it’s place came sadness, loneliness, pain, loss, grief. And I let myself feel it. And I let myself cry. And my children think I am crazy.

But now, I don’t feel so angry and I don’t feel so sad. I had my moment and now I can move on. And I think that’s exactly what I’m supposed to be doing.

Next weekend is the Celebration of Life. Tomorrow I am supposed to go through all our pictures and decide what to use for a slide show. All of Ash’s life condensed to one slide show. I’m not sure there’s enough wine in the world. Wish me luck, friends. My fist and I are going to need it.

Insights From a Dead Man

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Today I was cleaning my office. There were piles and piles of paper on my desk. Old bills – that probably got paid, several children’s drawings that you know are shit but feel terrible about throwing away, so many sympathy cards that I both love and loathe, books, more insurance notices than I could ever possibly need (hello insurance company, I’m aware my husband died, I’m the one that informed you, could you please leave me alone now?), photo books that we made over the years. You get the picture, my office is a mess, still is, because underneath all the piles I was searching through, I found a notebook.

Ash was big on notebooks. He loved to write things down and then forget he wrote the things down, ask what he did with the notebook where he wrote the things down and get mad at everyone for misplacing the aforementioned notebook. It was a thing. It happened a lot. We got used to it. I’m not sure he did, though.

Anyway, at the bottom of one of the excessive piles on my desk I found one of Ash’s notebooks. In it, there was a letter that he wrote to me on my birthday this year. I won’t share that with you because that’s just for him and me. But I also found just some things he wrote down that I think can help us all and I’d like to share them with you.

His Advice to Jack, Colt and me (and everyone else too):

You can do anything you put your mind to. Seriously. Write down your goals.

Choose your friends carefully. Good friends care about you. They hold you accountable. They support you. They do not try to get you do do bad things. They have your back.

The most successful people are also the most focused and hardest workers.

Surround yourself with happy, positive people. Life is too hard to be negative. Life is too good to be negative. Life is too short to be negative.

See the good in life and in people.

Live by the golden rule. Know the difference between right and wrong, between good and bad.

Make the right choices.

Live with a clean conscience.

And lastly, Kellie, Colt and Jack go play golf! Top Golf counts, but not every time. You must play family golf at least once a year.

Ash lived in his 37 years. He lived more than most do in a whole lifetime. And he loved to give advice, solicited or not. I am extremely grateful to have found this today. I am extremely grateful that he chose me to spend his life with. I am extremely grateful.

I will heed his advice every day. I will also mess up every day, but that’s ok, too.

And I can’t wait to find more notebooks.59206749902__B8CA1DFA-1433-4BC0-A5BE-CC94501FA740

 

Take It On Back

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I met Mr. Wonderful (his name is Ash, and I feel like I may actually start using his name now – I don’t think he gives a shit about anonymity anymore) at a Relay for Life event. How’s that for ironic?! We were set up by mutual friends. He was from Texas. I was not. He had a niece and nephew with him. I did not. They were very young children and I did not know how to interact with young children, so our meeting didn’t last long, plus I was doing some very important sumo wrestling “Relay” job and it needed my full attention!!

Side note – I later found out that the only reason he agreed to meet me was because “my name sounded hot” so there’s that. Kudos mom and dad! I’m sure that’s what you were hoping for when you named me all those years ago!

Anyway, we met, he apparently thought I was “ok” and called me the next day at work to officially ask me out on a date. Me thinks he thought I was a little more than “ok” but even up until the very end, he never admitted it. Ass hole. That was kind of the nature of our relationship. He thought I was “ok.” I thought he was an ass hole. An ass hole that I loved, however. He probably loved me, too!

We went to a local restaurant on our first date. We met there in separate vehicles, because, what if we hated each other and needed to escape. We were young, we were attractive. I’m pretty sure I changed my outfit no less than 13 times trying to look classy, yet sexy. There’s a very fine line. I had liked what I had seen enough at Relay for Life to care how I presented. I wanted to make an impression!!

I had a great time on our first date. Now, I kept up with him IPA for IPA, and back then, I didn’t have 2 kids, a large SUV and 2 dogs. Tubby I was not! Competitive? For sure! So, again, kept up with him beer for beer. Got a little drunker than I should have, may have talked about my “perfect tits” (I’m not sure if they were perfect back then but I can assure you, after attempting to breast feed 2 children and living in terminal cancer land for the last 13 months, perfect is not the word that comes to mind) a little too much. Young and stupid brunette, booth in the back, here I am!!

The point is, I didn’t know that would be my last first date. I was actually seeing someone in a kinda sorta way when I met Ash (you can read between the lines – sorry mama!). I called that guy on my way home from my first date with Ash  and told him I couldn’t see him anymore, I had met someone, and I wanted to see where it would go. I knew this other thing was going nowhere but it was fun nonetheless. Ah, to be in your 20s again – again, sorry mama! But there was something about that first date, I knew it was special, and I didn’t think it had anything to do with the massive amount of beer (maybe it did a little 😉 but I felt SOMETHING and it was exciting.

I won’t mention that the next day I had to call in sick to work because of my massive hangover. Or maybe I will. Whatever. We’re all human here. I still like to drink beer. I’m still massively competitive.

Unfortunately, I didn’t hear from Ash again the next day or after the standard cool guy 3 day waiting period or even a week later. I assumed I was too much, too much loudness, to much tit talk, too much beer drinking, sailor-mouthed, unladylike kind of gal. And that was ok. I am not everyone’s cup of tea. I was sad, nobody likes rejection, and I thought we had a great time.

Low and behold, 2 weeks later he calls me. Wants my opinion on what color sheets he should purchase from the Ralph Lauren Outlet. I’m excited. I’m confused. Will he ask me out? Does he like me? Is he the weirdest man I’ve ever met?

All of the answers were YES!!! He did ask me out, eventually (although not the day of that phone call). He did like me. He is undoubtedly the weirdest man I have ever met. And today I miss him. As I will miss him always.

But today I had a good day. And I thought about how we met. And it didn’t make me cry. It made me smile.

 

 

Aluminum

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I just had a very hard time spelling aluminum. I’m still not sure it’s right?! I literally sounded it out in my head at least 7 times and went back and re-typed it 3. Someone’s a genius!!!

Aluminum you ask? Well, that’s the anniversary I just celebrated with Mr. Wonderful. Apparently 10 years is the year of aluminum. Reynold’s Wrap for the win!

Anywho, 10 years – I can honestly say I never thought we’d make it! We’ve had some trying times in our relationship (I mean, before the obvious terminal cancer bit). Several times we were both done with each other for one reason or another. Most of them really meaningless. Some of them not as meaningless, but we fought, we battled to Seattle if you will (more than once), we did couple’s therapy, we did online seminars, I did therapy on my own. We put the time in, and you know what, we learned, we grew, and we made it fucking work! And I couldn’t be prouder of that. So, again, 10 years means a lot to us.

Now, another reason I didn’t think we’d make it to 10 years is that obvious terminal cancer bit. The one we were hit with last September. The one I was going to blog about on here, about our journey, our feelings, every little detail you didn’t care to know! Surprise! I didn’t do it, couldn’t find the time, couldn’t find the motivation, couldn’t find the want to! (I know that no one is really shocked by this!) But, when we were told 8-12 months last September, I didn’t know if we would see the year of aluminum. That’s a hard thing to admit. But, we did make it, and we tried to make it extra special. Mr. Wonderful and I had an adventure in Durango, CO.

We used to live in Durango for a short time in our lives, before the dog, before the marriage, before the kids and houses and responsibilities and you get where I’m going. Back when we were young, dumb and in love. We spent about a year in Colorado and Mr. Wonderful has been itching to get back to Durango since we left. And it was even more gorgeous than I remember it, but I tell ya, it made me realize how lucky I am to live where I live, surrounded by the people I love! Man, am I sappy today!

The adventure we had hoped to have wasn’t quite the way we thought it would go. Cancer will do that to you. Most of our every day lives we are surrounded by kids, family, friends, chores, beach time, pool time, so many things that keep us distracted. Mr. Wonderful and I don’t really think about the future, how uncertain it is, what it will look like, we stay busy, which makes it easy to forget that he has terminal cancer. I mean, we’re not daft, we know it’s there, we know what it means, I just mean that we don’t let it affect us every day because we don’t have time to think about it.

Well, go on vacation without the children was our brilliant plan! And it was brilliant. It was just also really, really sad and really, really quiet. Without all the distractions, we did have time to think, reflect, look back and look forward. I cried more last week than I probably have in the last 6 months. I could not get my shit together. And I think that’s probably ok. I hold it together pretty well generally. Just the quiet – Mr. Wonderful and I have lost our ability to carry on a conversation about nothing, we small talk no more. We can go and have a good time but there is constantly a black cloud hanging over our heads. I cried at most of our meals, making all the people around us feel super awkward. If one of us wasn’t crying, our eyes were just darting around the room, watching other people. Again – hello awkward couple – I thought we had at least 20 more years before that phase set it. The cancer, the treatment, both have really taken it out of Mr. Wonderful. Our hikes were short, our naps were long. And that is all wonderful, except for I know what it means, I know what’s coming. And I don’t know how to handle it.

Complain, Complain, Complain

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Full Disclosure: I’m feeling very whiney and complainy today. You may want to skip this.

It’s Monday, March 11. Last week, we were at Duke Tuesday and Wednesday. Mr. Wonderful had a biopsy Tuesday, treatment Wednesday. Simple enough. Or was it (in my best Keith Morrison dateline voice)? Biopsy – failed. Treatment – nearly failed. Poor Mr. Wonderful was poked no less than 5 times trying to find some viable tissue. They couldn’t find any using ultrasound, which I guess is good, means some of the tumor is dying I think but also means we need to do a repeat this week with a CT scan with contrast (whoa that’s a lot of very medically things). Next day, Wednesday, is treatment day. We reschedule the biopsy for this Tuesday (as in tomorrow). We head to the lab for blood work. Oh, more good news, Mr. Wonderful’s port isn’t working properly. No worries, they say, it just needs to be flushed they say. Could take up to 4 hours to flush, they say. Then they can do treatment, they say.

Well, Mr. Wonderful has one of those really invasive, quickly spreading go-f-yourself cancer’s where treatment is 3 times a month for 5 hours at at time. A short day on a good day, it is not! And now you’re telling us, no worries, just add 4 more hours to your day, then drive your exhausted asses home for 4 hours. Sure! Sounds great! Thank all the Gods there are for nurses! Those beautiful souls took pity on our poor, pathetic faces and asked Mr. Wonderful if he was willing to receive his treatment through an IV while they flush the port simultaneously! YES! DO THAT! We all but screamed!! And they did and it was all fine and we even made it home in time to yell at our kids before they went to bed! The plan was to love on them, which we did, but then we yelled at them for you know doing what kids do when they’re supposed to go to bed and don’t want to and just take it upon themselves to climb up the whiles instead!

So, anyway, we made it home, yelled at our kids, watched Vikings, went to bed and continued on our normal business as usual.

Speaking of business, we’re trying to sell ours. It hasn’t been open in months. We don’t have the time, energy or customer service attitude to run it ourselves. Our employees (the good ones anyway) were all part time so we can’t have them run it for us. And it’s just time to let it go. There are people talking to us about it. We have it priced to MOVE and I do mean PRICED TO MOVE. It’s a stressor.

Parenting is a stressor.

Cancer is a stressor.

Selling the business is a stressor.

I just feel stressed. And I feel like complaining. And today I feel like crying.

It was my 4 year old’s special day at school today. He brings show and tell and provides his favorite snack for the whole class. He loves his special day. Mainly for the show and tell. Guess who totally forgot? If you said this girl, you are the winner winner chicken dinner. Just kidding, there’s no dinner. I have no food in my house. And no time to go to the grocery store. Because I’m either driving to Duke, at Duke, driving home for Duke or meeting with people that probably won’t buy my business. (see the complaining happening here – I warned you).

The real kicker about forgetting my kid’s snack is that his wonderfully kind, generous, beautiful and all-around amazing teacher let me hand pick the day I wanted to bring snack because of the schedule we now live on. The hilarious part is that all weekend, I kept thinking “what is Monday” “I know I have something to do Monday” and it never once dawned on me, helllooooo, it’s Colt’s special day, go get some damn string cheese and apple slices, not that complicated ding-bat! But, alas, it was complicated to me. And I failed. And I hate to fail.

Now I must go get the other child from school. Perhaps I won’t fail at that, although who knows, maybe I’ll see a butterfly and totally forget him too. I think I have sympathy chemo brain…

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.