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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Because she’s losing her memory…

The day is coming, probably sooner than I would like, when my mother won’t know who I am. 

I’m braced for it.  I have promised myself that I won’t fall apart… at least, not in front of her.  I’ll wait until I’m out in the parking lot, and then I’ll probably cry until I’m calm again.

We stopped by the nursing home she’s in this evening on our way home to Central Texas, and when I greeted her, she sat up with a smile, happy to have visitors.  Even though at first, she had no idea who we were, just that we were family.

We all said hello, and I sat down next to her and took her hand after helping her get her glasses on, and I could see her staring at my face, trying to get some sense of recognition.  So I said, “Do you know who I am?”

She smiled and said, “Yes, I do.  You’re Blondie… no, wait… you’re Toast.”

A lot of people who haven’t see us for a few years usually mistake me for my middle sister.  A few might mistake me for my oldest sister.  Blondie and I share a lot of personality traits, and facial expressions, but she’s fair, blonde, and green-eyed, and I’m olive, auburn, and brown-eyed.  So it’s not that far out of the way that Mom would guess I’m Blondie first.

Except she’s my mom, and in her normal state of mind, she’d never make that sort of mistake.

In her normal state of mind.

I hugged her and said, “Yes, I’m Toast!” and proceeded to chat with her, and have the kids sit with her and visit, but I could see that she had no real idea who I was.  Just… that I was family.  That I was one of her daughters.  But… she didn’t know me.

It wasn’t until we were leaving, and I had hugged her and said, “I love you, Mom.”

She said, “I love you, too.”  Then something seemed to spark in her mind and she stared at me intently.  “I love you,” she said as I stepped back to the curtain divider.  “I love you… like… a bush.. and … and a.. pickle.  A peck.”

I felt tears sting my eyes, and I sang, “A bushel and a peck and a hug around the neck.”

She joined in.  “A hug around the neck, and a barrel in the heap.  A barrel in the heap and I’m talking in my sleep about you, about you…”

“Toast,” she said with a huge smile and recognition in her eyes.  “There you are.  There’s my baby.  That’s my girl, my little Toast.  My tomboy.”

I fought back tears and kept singing.  “I love you, a bushel and a peck, you bet your pretty neck I do.  Toodle oodle oodle, toodle oodle oodle, toodle oodle doodley doo!”

I hugged her again, and she whispered, “You’re my baby, and I’ll never forget my baby.”

“I know, Mom,” I whispered back.  “I love you.”

I left, and I had tears running down my face, but I held it together all the way home, until now. 

That day is coming, when even singing what my daughter used to call affectionately “The Grandma Song,” won’t fire off the right neurons in Mom’s mind.  I’m going to hate that day.  But… I think I’ll get through it.

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Warning for Whinage…

Sometimes, I just need to… vent.

I am so tired of being… tired.  I am tired of the cycles of feeling kinda okay, and then feeling like absolute crap.  I am tired of not having the energy to do the things I want to do… or the things I need to do.

I am tired of watching my husband come home, exhausted from a day’s work, only to have to take up my share of the workload because I can’t do it.


I am tired of the headaches, the joint pain, the muscle weakness, and the overwhelming fatigue.  I am tired of my hair falling out.

I am tired of wishing the rest of it would just fucking fall out already so it would stop making my head hurt.

I am tired of my fingers looking like sausages when they swell.   Of the way my feet ache.

I am tired of being cold all the fucking time because my thyroid is playing dead.

I’m tired of my immune system playing helicopter parent and attacking every single part of me just because it’s paranoid and thinks I’m about to get sick.  Or that I’m already sick.

I’m tired of having to say no to my husband and kids when they want to go do something that requires energy that I don’t have, because I really, really, really want to go swimming and hiking and climbing and having adventures… but I can’t depend on my body because my thyroid is an asshole and my immune system is stupid and…

I’m just tired.

Mostly, I have good days.  And I’m able to be positive and somewhat philosophical about having an autoimmune disease.  I try to look at the positives and try to basically make lemonade out of the lemons life has thrown my way.

But every once in a while, it just… overwhelms me.  There’s so much to do.  So much.  Just doing a couple of loads of laundry will sometimes take me all day.  I just swept the dining room and living room and it feels like I’ve been cleaning the entire house, re-digging the garden, replacing the roof, mowing the lawns, and jogging a marathon right afterwards.

No, seriously, if I’m going to be this tired and sore, I want to have earned it, not just… gotten up out of bed.  If I’m going to hurt this bad, then I figure I should have, oh, I don’t know, climbed a mountain.  Or taken on four teams of Navy SEALS in a hand to hand fight and WON.

I know that in a couple of days, I’ll feel better and my mood will improve.  But right now?  Life sucks and I just want to curl up somewhere and cry for the next two or three hours.

 

 

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