It’s Worse 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…

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The More You Learn…

I’ve felt the urge to start writing and working again, and since I’m hanging out at the public library regularly while my son works on his G.E.D., I decided to take the opportunity to get some research done.

“The Pestilential Adventures of Mrs. Osgood Peabody” is calling for attention, so I decided to dig into the influenza pandemic of 1918 since that’s going to have a lot to do with the second half of the novel.

You know, considering what a devastating impact the so-called “Spanish flu” had on the world, you’d think at least my generation would have learned about it in our history classes, but I don’t even recall it being so much as mentioned until I was in college, and even then, it was in a literature class because we were reading Thomas Wolfe’s “Look Homeward, Angel.”  And that only because of some questions a classmate had about the death of the main character’s brother.

The one thing I’ve seen over and over again in my reading is how, after that dreadful year of 1918 through 1919, the survivors just wanted to forget it and move on.  But the odd thing is, the Great Pandemic still resonates through our societies even now in ways that, well, I can clearly see it NOW, but before doing all this research, I just thought it was … well… just the way things were.

All those “don’t spit on the sidewalk” ordinances that you don’t now about until one of your kids or the guy you’re dating does it in front of a cop on the wrong day? Think it’s just a municipality being nit-picky or a way for a city to make revenue?

Nope, it’s a health ordinance that dates back to the 1918 pandemic.  Doctors and health officials may not have known the direct cause of the flu, but they knew it was spread through body fluids and could float through the air on water vapor/droplets.  So they passed temporary ordinances for the duration requiring people to wear face masks that tied behind their heads when out in public.  And when they realized spitting on sidewalks and streets meant people were picking this stuff up on their shoes and carrying the contagion into their own homes, they passed ordinances to stop people spitting on sidewalks and put up signs and passed out handbills, etc.

The over-prescription of antibiotics can be traced back to 1918, and so can patients demanding antibiotics for everything.  Doctors were helpless during the pandemic. There was literally nothing they could do, nothing they could prescribe to help their patients.  As my mom said of the time before antibiotics, “All we had was alcohol, aspirin, ice, and painkillers.”  There was quinine, but since the flu wasn’t malaria, it didn’t do a lot to help.  Doctors at that time could barely make their patients more comfortable, and if the patient had the most severe form of the flu, they could only watch them die.  Sometimes, it hit so fast that the victim would collapse and they were gone.  So is it any wonder that when antibiotics came along, this wonderful class of miracle drugs that could cure diseases that had caused so much suffering for so long, doctors were prescribing them for just about everything?  And parents (and patients) who had watched family members suffer and die during the pandemic were demanding antibiotics for every illness?

How about those elderly relatives of yours who say, “Doctors don’t know anything,” and just sit there and suffer?  There’s a chance that they either watched someone they loved die in 1918-1919, or grew up hearing the story about someone they loved dying and the doctor not being able to help.

There were a lot of heroes from that time, but there were a lot of assholes.  Heroes like the doctor on the health board in Manchester, England who realized quickly how deadly this strain of flu was and immediately sent out handbills to local factories and businesses, telling them if an employee was sick, sounded sick, looked sick, or hell, even if they were faking it and claiming  to be sick, send that employee home and tell them to quarantine themselves for 3 weeks before returning to work, disinfect every single area that employee was in, and don’t force people to work sick.  He closed down theaters, public transportation, and after several children literally died sitting in their desks while in class, convinced the city council to close the schools.  He literally saved lives.  10,000 people in Manchester got sick, but only 329 died.

Then you have the asshole in London who refused to shut things down, saying there was no way to prevent people from getting sick so there was no use trying and with a war going on and the very survival of the British nation at stake, it was extremely un-patriotic to do something so trivial as to worry about getting the flu.  I haven’t gotten that far in that part of the book I’m reading, because I had to stop, I was so furious, but I hope that asshole died.

In some ways, this stuff is kind of hard to read, considering what I went through back in January and February, but it’s also fascinating.  Fascinating to realize so much of our public health policies in practically every country on this planet date back to the events of 1918.

You know how just before flu season rolls in, right around in September, all you hear on the news, on the radio, on social media, or see on billboards, on bus ads, or hear in the pharmacy is, “Flu shots are in!  Get your flu shot!”  Even your doctor will start bugging you about it.  And I know there are a lot of people who won’t get their flu shot, or complain that they get the flu every time they get the flu shot.  Well, let me tell you something.  Getting the flu shot last year saved my fucking life.  I had pneumonia bad enough to be hospitalized twice… but… I didn’t have the flu.  In fact, I was the only person on my floor who didn’t have the flu.  They gave me Tamiflu between hospitalizations to keep me from getting the flu, just in case, because I was that sick.

Anyway, I digress.  Anyhow, you get harangued on every street corner, every time you turn on the TV, every time you get in your car to get your flu shot.  And when the flu hits and the first cases roll in, you start getting reminded on what to do to NOT get the flu.  Wash your hands, don’t touch your face, wear a mask, keep hand sanitizer on you, don’t go to work sick, etc. etc.  Well, there’s a reason for that, and it all goes back to 1918.

Seriously, it does.

It wasn’t just a normal flu virus that year.  It was a lethal version that had stewed over a summer after a first wave in the spring, changing and mutating in the muddy fields of France between trenches, bathed in mustard gas and incubating in the rotting corpses of soldiers lying in No Man’s Land who couldn’t be retrieved because it was too dangerous, and it traveled in crowded Allied troop ships to various embarkation points and finally came ashore in the flooded lungs of three sailers in Boston.  And if just one fucking health official had said, “You know, this bug seems to be really contagious, maybe we should isolate these guys and limit the number of those attending them, just in case.”

But they didn’t, and it walked out of the hospital and into the civilian population.  And people died.  By the millions.

So, when you’re watching the news during flu season and they tell you to wash your hands, to not touch your face (because the virus will go from your hands to your face and through your mouth and nose and make you sick), to wear a fucking mask, to NOT go to work if you’re sick, or not send your kids to school sick… LISTEN.  Because every year, health officials tell us this, flu season passes, and everyone says, “Look, hardly anybody died, it wasn’t that bad, they were just over-reacting.”

Yeah, you know why?  Because the one time they didn’t “over-react,” millions died.  Not just here, but all over the world.  And the reason we haven’t been dying by the millions since is because lessons were learned.  There’s a reason they taught you in elementary school to wash your hands before eating and after using the restroom, why they taught you to use tissues to blow your nose instead of handkerchiefs and dispose of them, why they taught you to cough and sneeze into your elbows instead of your hands.

1918.  That’s why.

Later, I’ll post a list of my source material that I’ve been reading through and watching.

But for now?  GO GET YOUR DAMN FLU SHOTS, PEOPLE!  And take my advice, if your doctor or pharmacy has the quadrivalent shot, or what they call “the quad,” get it.  Normally, the flu shot you get is called a “trivalent” shot or “the tri.”  The tri shot protects you against both influenza A viruses, but only one B virus, and it’s a guess which B virus will be circulating any particular year.  See, if you get your flu shot and you get the flu, it’s usually because you got the one virus your shot didn’t protect against.

The quadrivalent shot, or “the quad,” is designed to protect against four different flu viruses; two influenza A viruses and two influenza B viruses.  If you’re able to get it, get it.  If you’re not, please still get your flu shot.  It really does matter.  The more of us that get it, the more of us there are to protect people who can’t get vaccinated, like babies under 6 months of age, or people who are immunocompromised because of autoimmune diseases, or taking chemo for cancer.

Get your flu shot.  It matters.

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Dystopia Now…

There are times when I just… can’t watch the news or be on Facebook.  My anxiety zooms up through the roof every single time there’s a threat to the Affordable Care Act, because… my husband has cancer and will need treatment for the rest of his life, however long that is.

I can’t bear the thought of losing him.  It still terrifies me, and I think it will until that horrible day comes.  I still wake up at night and listen to him breathe and cry silently, heart pounding as I think of never hearing it again.  Of not feeling him there next to me in the bed.

If insurance companies are allowed to refuse to cover people with pre-existing conditions… well… that will be that.  No more treatment for his cancer.

I remember the bad old days when a pre-existing condition could get you refused coverage.  Every time my dad’s company changed health insurance providers, we went through it all over again, because of my migraines.  The new provider would guarantee coverage for the company’s employees, no lapse in benefits… unless someone had a pre-existing condition.  My mom would spend HOURS on the phone, working her way up the phone tree, all but begging them to not deny me coverage.  She would go through the manual of benefits the insurance company would give employees, reading through the fine print with a magnifying glass, looking for loopholes and arguing with the provider about contradicting their own policies, until she’d finally wear them down into saying, “Okay, fine, Mrs. Toast, we’ll cover your daughter BUT… we won’t cover anything to do with her migraines for six months.”

Every.  Single. Time.

This meant six months of not being able to renew a prescription for my migraine meds, because if the doctor authorized a refill or wrote a new prescription for my migraines, the clock would roll back and we’d have to wait SIX MORE MONTHS before the provider would cover me for my migraines.  They’d cover me for everything else… but not my migraines.

Imagine that.  Imagine having crippling debilitating migraines for SIX MONTHS before you could see your doctor for them.  I was in a school bus accident when I was 14 and suffered a major head injury and the migraines I had after that accident were… horrible. I couldn’t think. I couldn’t sleep.  I couldn’t eat.  I couldn’t FUNCTION.  I would sit and bang my head into the wall by my bed, because that felt better than the pain in my head. I wouldn’t sleep for six or seven days in a row, until I’d finally just pass out from exhaustion.  It was terrible.  All the testing I had to go through, just so they could be sure I didn’t have something like a broken piece of skull pressing in on my brain, or a brain tumor, or brain cancer, or SOMETHING to explain the pain.  And then my dad’s company changed health insurance providers, and my parents started the struggle to get me covered roller coaster. Imagine having to go six months every other year or so without medication for your migraines, migraines so bad you throw up, and all you can do is curl up in a ball on your bed, with the lights out and a heating pad on your head.  And you can’t go see your doctor or get medication for it, you can’t even go to the ER, because it will set your coverage back ANOTHER SIX MONTHS.

There were people who couldn’t get covered AT ALL, because of a pre-existing heart condition, or cancer, or recurrent sinus infections, or you name it.  It was HORRIBLE.

And they want us to go back to that?  WHY???

I… I don’t want to lose the Husbandly One.  What are we going to do if we can’t afford health insurance?

I… can’t even think about this.

 

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When Time Has A Due Date

One of the hardest things I’ve had to struggle to accept since the Husbandly One’s diagnosis is the knowledge that our time together now has… an expiration date.

It’s something you don’t think about at the beginning of a relationship, when you’re all starry-eyed and planning your life together. You plan a budget wedding, you get married, you scrimp and save, you get a dog, and your whole lives are laid out in front of you, you have years, you’re going to grow old together, it’s all part of the plan, right?

When we reached our twenty-fifth anniversary, the Husbandly One said, “Do you realize we’ve been married half our lives? Can’t wait to see how the other half turns out!”

It was exciting, even after twenty-five years of marriage to think that, you know?

Then he got so sick and lost so much weight, and we found out he had cancer. And suddenly, the rest of our lives shrank and I found myself begging the universe, “Please, don’t take him away from me, please, don’t let him die, please…”

We found a doctor, the treatments are working, and it looks like we will have more time together. But the likelihood is that… we won’t grow old together. And that just… breaks my heart.

I knew it wasn’t going to last forever. I knew one of us would go first. But… people in both our families live well into their nineties, it wasn’t inconceivable that it would be that way for us, too.

We’re 53 years old. I hope we both see 63 together, and I will count us lucky if we do. I will count every single moment as precious and golden and take whatever time we get. I want more. I want so much more.

I hate thinking about it. But it’s there.

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The State of the Husbandly One…

So, the latest in the Husbandly One’s treatment.

He’s had four chemo treatments so far, and it looks like treatment is working.  His initial bloodwork showed his cancer markers at 1800.  The bloodwork at treatment #3 showed they’d gone down to 370.

370!!!!

He’s also gained a pound.  Before, I would tell anyone who asked, “Well, he hasn’t gained any weight, but… he hasn’t lost any, either.”  So he was holding his own.  But he’s gained a pound, and it’s ridiculous how happy one damn pound makes me.

THO gets chemo every other Monday.  He spends thirty minutes getting a dose of steroids and anti-nausea drugs, and then almost three hours getting his initial dose of chemo drugs.  Then they set up a pump to deliver the drugs continuously for the next day and a half.  We leave and depending on how he’s feeling, we might get a few errands done, or just head home.  On Wednesday, we return and the pump is removed, he’s checked over, and we again go home.

By then, THO is usually exhausted and goes to bed.  He’ll spend the next two days sleeping a lot, or lolling in a warm tub to help with his pain.  It’s not as bad as it was, but a tub with epsom salts helps.  By Friday, he’s starting to feel more like himself again, and over the course of the next few days, he’ll want to do more things, get a little more active.  Which means I have to sit on him a bit to keep him from doing too much.  Next week, he’s supposed to get scanned to see what’s going on with the tumor and with his liver.  We’ll just have to see.  But for now, I’m more hopeful than I’ve been.

*keeping her fingers crossed*

 

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Things and Such…

So, things have gotten a little better.  I’m not panicking and crying at the drop of a hat any more.  We found an oncologist, we’ve got insurance, and we have a goal.

The Husbandly One has lost dangerous amounts of weight, because he’s extremely anemic and is like… two points away from needing a transfusion.  The oncologist, however, feels that an iron infusion would be more beneficial, so next Tuesday, THO will be sitting in a recliner for five hours while he gets intravenous iron.

On Monday, he’ll be getting an IV port surgically implanted for future chemo treatments.

Hopefully, the iron will help with the anemia and will stimulate his appetite so he can eat again.  He’s so so thin, and it’s hard not to be a little scared by it.  I have watched the weight literally bleeding off him…he now weighs 121 lbs, whereas he weighed about 165 to 170 last year at this time.  He was about 145 in September, which we had both said was a good weight for him.

121, though, not so much.

He’s going to get through this.  We are all going to get through this.

We can do this.

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Reality Bites… i.e. 2016 REALLY Sucks

I fully intended to work on a novel for NANOWRIMO.  I had a plot, and outline, was working on the characters, all of it…

Why didn’t I?

Because my husband’s health took a serious turn for “OMGWTF???”

He left his job in late September, because it had reached the point where the stress was quite literally killing him.  He wasn’t sleeping, he wasn’t eating, he was in serious pain… and he seriously wanted to murder his boss.

So, THO left.  His mother had left us a tidy nest egg that would see us through till at least January, and he could look for a job closer to home.  He got rid of his dying Honda Accord and got a used pickup that was in awesomely good shape and we settled in to get things done that needed to be done around the house.  Stuff we’d put off because he was too exhausted from work to deal with.

At least, that was the plan.

And at first, things were going well.  He felt better at first, and got a lot of stuff done.  We did stuff.  Went places.  And then… he started feeling worse.

He stopped being able to eat.  He couldn’t sleep at night.  And he had serious pain in his back, legs… and bottom.

It took weeks for me to convince him to go to the doctor.  And the gastroenterologist promptly scheduled him for a colonoscopy.

He has a malignant rectal tumor.

All I can think is, “No, I can’t lose him, I can’t lose him.”  I’m terrified.  HE’S terrified.  And I don’t know what to do.  He’s already giving up and it’s all I can do not to grab him by the front of his shirt, shake him till his teeth rattle and scream, “What is WRONG with you??? Why don’t you want to FIGHT this??? Aren’t we worth it??? Aren’t your children and your wife worth fighting to LIVE for???”

It’s not logical.  It’s selfish and scared, and it makes me feel terrible to think that way, but there it is.

I’m watching him fade away and there’s not a damn thing I can do to stop it.

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