Tag: cancer

Purgatory

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Disclaimer: There is much cursing, sadness and self pity happening up in here…

Am I in hell? Purgatory? Some days it certainly feels that way. I’ve heard you must pay for your sins here on Earth before you can make it to the pearly gates. And I’ve got to say, I’m sick of paying. I’ve sinned. Lord knows I have. But when will the debt be settled? How much longer will this Groundhog Day continue? I’m guessing for the rest of my life. I understand that there are different chapters in life, and to get to it, you must go through it. But I’m fucking sick of going through it.

I’m being a bit dramatic, I know. But 2 years ago, our lives changed forever. August, 2 years ago Ash really started feeling like shit. Unfortunately, we equated it to his liver disease and didn’t really think much of it. I’m not sure it would have a made a difference had we sought help sooner as he was diagnosed with rare, no cure cancer, but that’s one thing we will never know. (Although, let’s be fair, the outcome would have been the same.) For some reason, though, this month 2 years ago has really been weighing on my mind. We were ignorantly happy, working, playing, enjoying ourselves and then BAM, life was never the same again. Hell, Ash was so used to feeling like shit, I/we didn’t even notice how bad it had gotten, how much he had thrown up, how much weight he had actually lost. And all these things are spinning through my had like a hamster on a wheel, over and over and over again.

We did our best while he was still around but everything changed. My role as wife became something completely different. Nurse, caretaker, fetcher, pharmacist, waitress, masseuse, (although, let’s be real, some of these things I was doing before devastating cancer news) we were still friends, we still made each other laugh but everything wife was no longer what one thinks of as a typical wife. He fought for 13 long (and very short) months. For a while, on the chemo, he did great. And then it stopped working and nothing else worked again. And that poor man suffered. He suffered so much. Yet, if you knew him, he never let on to how bad he was truly feeling. Which, also if you knew Ash, was very unlike him. Men get fussy when they’re sick. They like to be babied. Unless they are dying. He was tough as nails. He fought so hard. He was my hero.

And now, I just can’t stop thinking about the hell he went through and the hell we are still going through. Which, again, is dramatic. I am aware that we are extremely fortunate and have so much to be grateful for, and we are, but I am also aware that there are a few things for which we are not so grateful. Losing Ash – husband, father, friend – we’re not feeling very appreciative of that. Almost immediately following that, as if our lives and routine weren’t fucked up enough, enter global pandemic – not really appreciating that one either. Remember the movie Groundhog Day? That is what this new normal feels like. I am trying to keep alive and entertain 2 children, who I fear might not actually like me anymore (they love me, but like, that’s a bit questionable these days). Possibly because our “pandemic” started 2 years ago. And we’ve all changed. So, so much. Because of course we have. You can’t lose the. nucleus of the family and come out unscathed. We have bad attitudes, we are constantly irritated with each other, we are short on patience, we are tired no matter how much sleep we get. And we are so sick of it. We want out. We want life to go on. We want our new normal to be, well, more normal.

And I understand, we all feel this way. Shit is crazy for everyone right now. But this is my pity party, and I’ll cry, bitch, moan and complain if I want to. It doesn’t matter how much we do, how many loved ones, friends, family we surround ourselves with, there is still this bottomless pit of loneliness deep inside that I am desperate to fill. And sometimes, it does fill like I’ve done a good job of filling it. Until it doesn’t again. That bone deep sadness and loneliness always comes back. And I wonder – is that just how it’s going to be for the rest of my life? Will there always be a void? Will my heart always feel just a little bit broken? As mama always says, time will tell. I hate to wish my life away, but I wouldn’t mind fast forwarding just a little bit to get through this shit show we’re in right now.

We’re really ok. We have so much. We love so much. We are so loved. But, we’re also a little bit not that ok.

 

Nothing and Everything

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My husband is dead. It’s been almost 6 months. And he’s still dead. I walked into our, well, my, technically, bedroom tonight and I could smell him. And I sobbed. He didn’t even really have a particular smell. He didn’t wear cologne even though I kept buying it for him. He used whatever soap I purchased, so I guess we smelled pretty similar. His shampoo wasn’t super aromatic. But I swear I could smell him. So maybe he did have a scent.

I miss him. And yet, it’s almost as if he were never here. I often wonder how in the world did it all happen. Why did we meet? How did we fall in love? How did we come to marry and have children? And how on Earth is he gone? At 37 years old. I’m 13 days older than Ash and he always joked I would die first, naturally, because I’m so much older. But that didn’t happen.

He started getting sick in 2014. I also happened to get pregnant at the very end of 2013 so, at first, I felt like he was stealing my thunder a little bit, what with all the throwing up and not getting out of bed. That’s what I was supposed to be doing. He had countless doctor appointments and multiple hospital stays before he finally ended up with a diagnosis. Primary Sclerosing Cholangitis. It’s an auto-immune disease that affects the liver and bile ducts. I’m sure you could have guessed that if you have been reading my writings for a while. There is no cure. He may need a liver transplant 10-15 years down the road. Ash’s doctor was world famous. One of the best in his field. We were scared back then but he assured us, most people that have PCS die with it and not from it. Most people.

Ash and I changed our lives. Our marriage had been more than a little shaky for a while. At times, I did not deserve him. At times, he did not deserve me. But once he was diagnosed, back in 2014, our perspectives changed quite a bit. We learned to accept each other. We worked at it every day. And it worked. We changed. Ash had to quit drinking, you know, because of the whole liver disease thing. He started a clinical trial, we had to travel a couple hours north once a month to his doctor to check in and they were some of the most fun days in our relationship. We learned to communicate with each other again. We fell in love all over again. I guess, in a way. Life changed, for the better, if you can believe it.

In April, 2018, we were back at Ash’s liver doctor, just for a routine check up. And the words that came out of that doctor’s mouth was some of the best news we’d ever gotten in our lives. He said “I don’t know what you’re doing, but keep it up. Your numbers are incredible. We don’t see this with this particular disease much.” In September, 2018, he was diagnosed with Stage IV Terminal Cholangiocarcinoma. Bile Duct Cancer. Terminal. That’s how fast it happened. He went from what we liked to joke as a “medical marvel like Ross Gellar” to a dying man. How does that happen? Why does that happen?

I just miss him. I miss kicking his ass at Mario Cart. I miss all our date nights. I miss holding his hand. I miss just driving around doing nothing with him. I miss the way he could make me laugh. I miss his amazing smile. I miss his positive attitude. I miss how he always knew when I was about to start my monthly business based on my attitude. I miss hearing his voice. Jack has Ash’s old cell phone and the voicemail on it is still Ash’s voice. I call it, at least a few times a week, just to hear that “Hey, it’s Ash’s voicemail. Leave a message.” Simple. To the point. Just like Ash wasn’t. Ha! (It’s funny because it’s true.) Either way, I miss him. Hell, I miss the shit that I hated and thought I’d never miss. But I do. Grief is annoying like that. It reminds you that even the bad shit wasn’t really that bad. In my case anyway.

The kids are so incredible. They are so resilient. So in the moment most of the time. Sure, they have their breakdowns. But they are less frequent. I’m so envious of their strength. They are growing and learning and they are just amazing.

I don’t know the point to any of this, other than I went in my room, could smell my husband, sobbed and felt the need to write. So I did. And it’s helped in the way that only it can. My own personal therapy. Remembering him is a gift, one that I hope to only love one day.