Tuesday, March 7, 2017

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.