Seven Days...

Last Sunday,November 10th, a little after 2:18 a.m., the Husbandly One breathed his last breath and was gone.  Just like that.

I was trying to give him a dose of medication to clear his airways, and had just asked him to open his mouth a little wider so I could get the oral syringe in.  His eyes flicked toward me, his lips moved and he whispered... something... and then he was gone.  I had stared at him, then stood up and said, "Oh," in shock.

Our friend, K, who was there helping me with the night watch, stood up and leaned over him to look, then looked at me, her eyes wide with shock, and she said, "Oh," the same exact way I had.

The next thing I knew, I was wrapped tightly in her arms, and I was roaring with grief as my knees threatened to buckle, because the worst thing ever had just happened to me, and I was trying not to leave with him.

Most of that night is a blur.  I remember staring at his face earlier in the night, thinking death was coming soon as I noticed how his skin was molding to his skull.  I remember staring at his face after the hospice folks had cleaned him up and dressed him, touching his face and crying at how small he was, how thin, how... cold.  I remember sitting on the couch in the dining room, holding E's dear, dear face in my hands as she told me she loved me.  I said, "I know you do, because you came here without your teeth."

I remember how kind the hospice people were, and the policeman who came in with extremely neatly threaded eyebrows.  I remember my sister holding me so tight and telling me how sorry she was, and my other sister on the phone, telling me how much she loved me.  I remember the guy from the funeral home, who sounded like Barry White.  And I remember looking out the back door at this extremely beautiful sunrise and being startled that so much time had already passed.

And now, it's been seven days.  Seven days since my husband died.  Seven days since I last looked into his face, wishing I could relieve his suffering, and knowing there was nothing I could do except respect his wishes.  He'd been unresponsive since Thursday morning.  His last clearly spoken words to me were, "I can't breathe."

And because he was in hospice care, and had a Do Not Resuscitate order, I called Hospice and not 911.  They helped me calm him down and get him breathing almost normally, but he was practically comatose after that.  If you asked him to blink to answer yes/no questions, he'd do it.  He'd smile, or smirk, or waggle his eyebrows, and he would hold your hand, squeeze it, and tug on it.

We held his hand around the clock.  Seriously.  We took it in shifts, there was always someone there to hold his hand when I needed to sleep, or to eat, go to the bathroom, go outside and cry... someone held his hand continuously.  If you didn't, he'd look for a hand, reaching out and trying to find one.

So we held his hand.

It's been seven days since I held his hand.  Seven days since I ran my fingers through his hair and talked to him.  Seven days since I lost the one person who got me and loved me anyway.  Seven days since I told him I loved him and he squeezed my hand back to say, "I love you, too."

Seven days of pretending to be a functional competent adult.  Seven nights of sleeping alone in my full-sized bed that suddenly seems way too big.  Seven days of pushing down panic and staying calm so my kids stay calm.  Seven days of not going through the stacks of mail and papers on my desk to find out what OTHER bills didn't get paid.

Seven days of missing my best friend, the person I tell everything first, seven days of wanting to tell THO something, or ask him something, or just wanting to see him, just because.

Seven days of missing his Facebook Messenger icon being constantly up on my phone, because we sent jokes, memes, or photos we'd just taken of something interesting to each other.

Seven days.  And I will never, ever be the same again.

Fuck.  Cancer.

I'm Trying Not To Be A Wuss, But I Don't Think It's Working...

He's so damn thin.  I don't even want to speculate with how much he weighs.  His appetite is almost nonexistent, and warring with that is the  "don't waste food" mentality we were brought up with by our Depression era parents.

He thinks, "I can't eat an entire chicken pot pie, even though I want one.  And if I don't eat it, it will go to waste.  Therefore, I will not eat a chicken pot pie, so I won't waste the food."

He hasn't said that, but I'm pretty sure that's part of what's wandering through his head somewhere.

I had to change that mentality myself, especially over the last year.  And most especially where he's concerned.  So he can't eat an entire chicken pot pie, I'm just thrilled he ate some of it, you know?  Maybe I should do what I did with my mom when her appetite was decreasing.  You know, instead of cajoling her to eat, I would make a sandwich and say, "Oh, you know what, Mom?  I can't eat this whole sandwich by myself.  You want half?"

And because she grew up during the Depression, there was no way she was going to let that half of a sandwich go to waste, so she'd shrug and say, "Might as well."  And we'd sit there and eat our half of a sandwich and smile, and inside, I was cheering because hot damn, I got calories in her!

I just need to be even sneakier than usual, because he's always on to me.

Maybe that will take my mind off the thought of losing the love of my life way before I'm ready.  I'm really scared.  We go see the oncologist on Monday, and we'll see what we see.

I should probably go back to the doctor myself.  My ear is still bothering me.  It's kind of hard to focus on me right now, though.

I'm tired.  I'm hungry.  I'm scared.  And... I feel pretty alone right now.

Like A Thief In The Night...

Well, last night completely sucked.

No matter what I do, it's always there.  This... waiting grief.  It's so frustrating, and so.... time wasting.

I mean, he's here.  He's alive.  He's fighting.  He's actually doing pretty well on the treatment front.

But every once in a while, it sneaks up on me and sucker-punches me when I least expect it.  I can hear my mother's voice.  Don't borrow grief.  Well, I'm not borrowing it.  But it's very hard to live in the moment when your husband's having a rough chemo treatment, when he's cramping and going through diarrhea and spending hours in the tub, completely miserable, and you find yourself wondering how much he can take before it's too much?

Please let that day be far, far away.  Please.

I can't bear the thought of him not being here.

I can't bear the thought of him suffering.

I'm so... torn up and ... last night, I couldn't stop crying.

I hate this.  I hate what he's going through.  And I hate being so selfish.

Last night was full of dreams I only half remember, but I would wake up crying.  Not sobbing, just, I'd wake up with in tears, my face and pillow soaked.

Today is going to totally suck.  I hate letting him see how much this upsets me.  But I can't... I can't let him see this... I mean, I'm trying to be strong, dammit, not a child!

How do I do this?

It's Worst at Night...

Nighttime is the worst.  There are nights when I just can't sleep. 

I worry.  I worry a lot. 

I worry about my kids.  Granted, my oldest is an adult, and will soon be graduating with her BFA, possibly by next fall, and my youngest will be 18 in a month.  But I still worry. 

I worry about our finances.  I worry that we'll lose our insurance.  I worry that the Husbandly One will get worse, or he'll give up.  There are times, when he's asleep, that I will lay there and cry, dreading the inevitable.  I still have no clue how to deal with that.  He's 54.  I thought we'd be in our 80's or 90's before that became an issue.

But, unless some radical new miracle treatment comes along... I can't even think about it, even though I do.

I wonder, sometimes, if this ridiculous lingering illness I can't seem to shake off is really just extended broken heart syndrome.

During the day, we go along as always, trying to come up with enough energy between the two of us to get basic chores done.  Clean the kitchen, do the laundry, vacuum the house, hack back the bamboo that's trying to take over the back and front yards because the people who owned the house before us were idiots who really though they could keep the bamboo confined to one tiny spot in the yard.  We run errands, feed the cats, putter among the plants, watch the ducks, talk to the kids, you know, all the things you do during the course of the day.  And it's so much easier to push back the fear and anguish, the worry... I can focus on other things and do stuff.

But at night?  So much harder.  The house gets quiet.  I'm tired.  I lay down, turn out the light, wrap my arm around him and think, "He's thinner today." And then it starts.

It's so hard.  I lay there, my eyes burn, my face stretches as I force myself to breathe normally, fighting back tears as I think desperately, Please, please, don't take him away from me.  Don't take my husband, the love of my life, my best friend... don't take him away from me...

Sometimes, he just... knows, and he'll turn over, asking me if I'm okay. 

"I'm fine," I lie.  "Just... hurting a little, that's all."

No need to tell him that it's not my joints hurting.  Then we'd both be awake for the rest of the night.

Sometimes, I'm able to calm myself down and finally relax into sleep.

But some nights... some nights, I can't.  Some nights, I have to get up and go sit in the living room, or out on the back porch if the weather is nice.  Somewhere I can sit and cry my heart out, because... while I know the chemo is working NOW... I know that one day, hopefully years from now, but one day, he'll be done.  He'll have had enough, he'll be tired, and he'll say, "Enough."

Quality of life over quantity.

I can't even think about that right now.  It's really selfish of me, I know.  But I can't even bear to think about it.  The selfish, immature part of me wants to scream out, "DON'T LEAVE ME ALONE!!"

The selfless mature part of me is yelling it, too.

I just... can't even think of sleeping in that bed without him in it.  I can't think of being in that room without him.  In this house.  This life.

On the 16th, we'll have been married for 28 years.  I'm hoping for 28 more, but you know what?  I'll take every damn second I can get.

Tonight is one of those sleepless, full of worry, terror, and grief nights.  My focus for the last two years has been so narrow, just... getting through, day by day. 

Seriously, I am barely coping with any of this.  And I hate that about myself.

Day by day.

Now, if I can just get through tonight...

Life Comes At You FAST...

I haven't posted in a while.  2016 was... not a good year for us. The Husbandly One's job took a really... stressful turn,  to the point where it started affecting his health.  By July, I knew something was wrong.  Convincing him to go to the doctor, though, was another thing.  I also started suggesting a job change, because I was convinced this job was going to kill him.  He was so angry, and he'd come home all tied up in knots, unable to eat, and he started losing weight.  Lots of weight.

Labor Day, we took a family trip to Rockport that we almost didn't go on, because the Impossible Son caught a stomach virus earlier in the week that sort of... stopped up the plumbing, if you get my drift. He got better, and the trip proceeded as planned.  However, right after we got there, it was quickly apparent THO had caught the virus and was miserable.  I suggested we go home, but he was determined to have a good time and not wasted the money he'd spent getting the hotel room, he was stressed out and he wanted some beach, dammit!

Yeah, it was a pretty miserable vacation for all of us, but most especially for THO.

By mid September, his boss just... did that one thing too far.  Normally, the metals company he worked for gave the employees two weeks off at Christmas, because that's a slow season for them. However, an announcement was made that they would only have Christmas Eve/Christmas Day off, and New Year's Eve/New Year's Day off.  Okay, well, as THO said, that was kind of disappointing, but standard for most retail businesses.  To cap it off, though, his boss also announced that, starting in the new year, they would be expected to work Saturdays.  And even some Sundays.  In other words, six to seven days a week.  Mandatory.

WTF?

That was the straw that broke the camel's back, so to speak, and the Husbandly One tendered his resignation right then and there.  

I was so happy, because the week previous, he'd been in so much physical pain that I was terrified he was dying.  And I saw he was losing even more weight.

After he quit, though, he started feeling a lot better.  Which sort of supported my suspicion that stress had a lot to do with his issues.  We had fun, went exploring, paid the house and cars off, hung out with the kids.  It was a good time.  He looked at it as a sabbatical.  "Think I'll just take this time to fix what needs to be fixed around the house and yard, take little day trips, putter around, and relax.  Maybe we'll go all out decorating for Halloween and Christmas," he said with a grin.  "Then come January, I'll look for a more local job.  No more hour and a half daily commutes to Lakeway!"

Yep, I was totally cool with that.

This lasted until mid October.  He started losing even more weight.  He started having pain again.  Lower abdominal pain and anal pain.  We thought, irritable bowel?  I started trying to convince him to go to the doctor, but we weren't insured at the time.  The insurance he would have gotten through his company was extremely expensive... and absolutely useless.  And what we found through the Affordable Care Act in 2015 was... not great.  He was reluctant to go see our gastroenterologist, because I think he knew, he knew something was terribly wrong.

Finally, though, in November, it got to be too much.  He was in so much pain, he couldn't handle it and got... angry.  I put up with it, knowing from long experience that the more I insisted he go to the doctor, the more he'd resist.  I just had to wait him out on this.  Until I couldn't put up with it and exploded, pretty much letting him have it, because I was just so done with all the shilly-shallying.

He exploded right back, and after much tears and noise, he finally admitted maybe he should see the doctor.

No, I didn't do a victory dance.  I just called the damn doctor and set the appointment.

His weight loss was accelerating and terrifying me.  He was also suffering from restless leg syndrome, to the point where he was practically kicking me out of bed, and so uncomfortable that we couldn't sleep together.  I blew up an air mattress and set it up in our bedroom so we could at least be in the same room.  And we both, as a result, got more and more depressed and unhappy.  He started saying things like, "I know I'm not going to survive this.  I'm going to die," and "I have to make sure you and the kids are taken care of, I won't impoverish us by draining our money just so I can get treatment that isn't gonna work," and other cheerful pronouncements of that ilk.

Me?  I completely fell apart.  Literally and figuratively.  I spent hours walking around and bursting into tears at the drop of a hat.  He'd make a pronouncement of doom, I'd start weeping (I am not proud of this, by the way) because the utter thought of losing this man that I love so much was terrifying.  We expected to grow old together.  I knew one of us would go first, but I thought we'd be in our eighties, not our fifties.  I couldn't face the thought of a future without the Husbandly One, and ... I really, really didn't handle it well.

Throughout this, my oldest child, the Impertinent Daughter, was a rock.  She held us together, she made sure we all ate, she cooked dinners, did laundry, washed dishes, made sure her brother did his chores and his homework... and I'm sure wept herself to sleep every night.  

The Impossible Son, already having difficulties in school because of the stress the Husbandly One's condition since summer was causing, started failing his classes, but remained outwardly calm and cautiously optimistic.

So, we got in to see our gastro, Dr. K, who did a brief exam and listened to THO's symptoms (supplemented by me) and suspected ulcerative colitis.  He put THO on a low residue diet and scheduled him for a colonoscopy just before Thanksgiving.

Let me tell you something, keeping THO on that low residue diet took the resources of myself, the Impertinent Daughter and the Impossible Son.  But we did it, despite the whining and complaining.

He lost more weight.  And then... the day of the colonoscopy came.

We did the full prep.  It was supposed to clean him out.  

It didn't.

When we got to the hospital, THO was still having to run to the bathroom.  And when the procedure started... well, they had to go get a pediatric probe, because they... couldn't get in.  And when they did, Dr. K was very concerned.  

They took biopsies.

The Husbandly One had a stricture at the top of his rectum.  Two days later, we found out it was a tumor.  And a CT scan later, we found out it had metastasized to his liver.

The Husbandly One had cancer.

Part of me was... devastated.  The other half of me was relieved because this?  This I know how to deal with.  The unknown?  I can't handle. 

 Then it became an issue of trying to find an oncologist who would treat him.  Without insurance.

I convinced THO, however, to give the Affordable Care Act exchange, otherwise known as Obamacare, another try.    The oncologist Dr. K. had recommended us to rejected us, because of lack of insurance, and said they would refer us to Shivers Cancer Center in Austin, but wanted us to be aware that they would put us on a waiting list and would give priority to Travis County residents.

We don't live in Travis County.  We live in Caldwell County, just south of Travis.  There's not a lot of options for us in Caldwell County, and we also found out we could spend six months or more waiting just to be seen at Shivers.

The Husbandly One decided we should physically drive to the oncologist's office in San Marcos and talk to them, to be a physical presence and show we are real people, not just an abstract test result. He also explained to them that he fully planned to go on the exchange and look for a health plan, and asked plainly what A.C. A plans they accepted.  

Next thing we know, we've got an appointment to see the oncologist on January 3rd, and a list of plans to choose from, and something concrete to do.

Never underestimate the power of a face to face conversation.  No confrontation, just let them see who you are, and talk to them.

Things moved rather quickly after that.

His bloodwork showed he was extremely anemic, and his weight had gotten dangerously low.  In April, he'd weighed 150 lbs.  By December, he weighed 128 lbs.

Like I said, terrifying.

The first thing the oncologist wanted to do was give THO an iron infusion, to build up his hemoglobin and help him gain weight for treatment.  The second was to send him to a surgeon to have a port put in his chest, so that treatment could be administered intravenously through the port, rather than through his arm.  The plan was to do the infusion BEFORE the port was installed, but the moment the surgeon saw him, he wanted to do it ASAP.  

In the meantime, the Husbandly One was experiencing pain moving through his abdomen, which truly puzzled us, because he was experiencing near constant diarrhea (which wasn't helping on the weight issue at all).  He had the surgery for the port.  And afterwards, I was helping clean him up before getting dressed to leave, and as I wiped his bottom, he jolted and nearly hit the ceiling.  

We blamed it on tumor sensitivity.

Three days later, he's sitting in the bathtub, screaming in pain.  Literally.  Once again, I was done.  I picked up my phone, called the oncology center's on-call doctor, who said loud enough for THO to hear, "Go.  To.  The.  Emergency.  Room.  Now."

So we did.  The Impertinent Daughter drove and we got to Seton Hays in record time.  We checked in, he barely had time to sit down when we were called to the triage nurse, who took one look at his inability to sit or stand (he sort of hunched over the back of a chair) and had him in a wheelchair going to one of the treatment bays lickety split.  They tried to draw blood, realized he was dehydrated, and next thing we know, he's got two bags of saline hanging over him.  They whisk him off to do a CT scan, the ER doc stops me to tell me he doesn't have a mass in his abdomen, but he is concerned about the way the pain is moving and the fact that the Dilaudid they'd given him wasn't working to help his pain at all.

The Dilaudid was NOT working.  At.  All.

It turned out, however, that the Husbandly One was an over-achiever.  He had an anal abcess AND a kidney stone!!

One surgery for the abcess and three days of being in the hospital to pass the stone later, the Husbandly One's pain was practically gone and his hemoglobin levels were much better.

Things started to level out after that.  He still has pain, but Tylenol and Tramadol seem to work pretty well.  He's had three treatments so far, and the cancer markers in his blood have gone from 1800 to 370.  He hasn't gained any weight... but he hasn't lost any, either.  And now that he has a goal to focus on, things are easier.

I have hope that things will continue to improve.