Here's to a happier post on Monday. Fingers crossed, but I kind of feel like we're due, you know?
My dad has decided to try the chemo "one more time." If it knocks him down again, he'll quit. But not yet. Not yet.
They'll likely be removing one of the more hardcore drugs that was likely responsible for his bad reaction -- though that hardcore drug is absolutely necessary to fight a cancer as advanced as his, so at some point it has to go back into the treatment, so...
*rubs temples, sighs wearily*
(For the record, because it's been linked/emailed so many times, I have indeed read this article by Atul Gawande on hospice vs. aggressive treatment for terminal illness, and I forwarded it to my mom and quoted it to my dad and encourage everybody who hasn't read it to go do so right now, this second, even if you aren't currently dealing with end-of-life decisions. Which is kind of the problem. We don't want to think or talk about this stuff until we're in thick of it, when it's already past the point when we should have said "enough, stop.")
(Also, when I look at that picture I wonder if my 7-year-old self inadvertently invented the Snuggie, and whether I would have a valid claim to a few spare million blanket-with-sleeves dollars. Hmmm. INTERESTING.)
Here's to a happier post on Monday. Fingers crossed, but I really feel like we're due, you know?
Shh. Come here. Slowly. Casually.
God. Seriously. BE COOL. ACT NATURAL.
I need to tell you something but I'm absolutely terrified I'm going to jinx myself and ruin everything, so I'm going to type it out very s-l-o-w-l-y and s-o-f-t-l-y and hope that maybe the vengeful gods above are too distracted right now to pelt my ass with lightning bolts.
(And yes, it IS also Invent Your Own Hodgepodge-y Religious Deities Day today. Thanks for asking.)
So we appear to have stumbled upon a solution to Noah's picky eating habits.
And by "picky" I should clarify: This child has eaten NOTHING since his first birthday. In fact, he has continued to ruthlessly edit down his list of acceptable foods ever since, meaning that up until a few weeks ago he would willingly eat ONLY the following:
1. Dry Cheerios
2. Plain toasted waffles
3. Peanut butter & jelly, though he usually opened the sandwich, licked off the peanut butter and left the rest
4. Grilled cheese, except for the "cheese" part
5. Pizza, but only the crust
6. Individually wrapped cereal bars
And that, my friends, was seriously it. No fruits, no vegetables, no meats. There were, once, a handful of other foods he'd occasionally eat, that have dropped off the list one by one. He rejected macaroni and cheese, for Christ's sake. I became the mother who would have been THRILLED to see my child agree to eat a damn chicken nugget or hamburger or french fry. I hid traces of pureed fruits and vegetables and beans in whatever I could, but seriously, look at at that list. My subterfuge options were quite limited, at best. The kid drank a LOT of homemade smoothies, packed full of dubious combinations like...apple juice, pineapple chunks and frozen broccoli, which he would drink no problem. But put any of those ingredients in front of him, in solid form? Forget about it.
We read books. We ate as a family. We ignored him. We refused to short-order cook and did the whole "division of responsibility" thing where we placed food in front of him and that was that. Well, except for the histrionics and wailing that accompanied every meal. And the no eating. He skipped meal after meal knowing that he'd eventually make it to breakfast where he could get some Cheerios.
We tried playing hardball. We pushed and insisted and threatened and re-served rejected foods over and over. He threw tantrums and whined and was sent to bed early night after night, and it solved nothing except for further entrenching everybody into a miserable battle of wills.
We tried peer pressure and bribery and "just one bite" and a good five dozen other tactics that YOU KNOW aren't going to work but the tactics everybody SAYS will work aren't working and it's driving you crazy because OH MY GOD, the buttons this kid manages to push at dinnertime when all you want in the world is for him to EAT SOMETHING. BESIDES CARBS. AND AIR.
Another problem, besides how incredibly limited his diet was, was that Noah was a s-t-a-l-l-e-r, even when he was served an acceptable or favorite food. Meals stretched on for h-o-u-r-s, or until we gave up and dumped his plate. He sat and sang and turned around and flopped upside-down off the edge of his chair and pretended the spoon was the Millennium Falcon and ate at a rate of one bite per 20 minutes.
This meant he was frequently getting hustled onto the school bus at 12:15 with only a third of his sandwich eaten -- the sandwich he was originally served over an hour before. This meant dinnertime was a constant nag-fest as Jason and I attempted to keep him focused and on task and EAT, NOAH. TAKE A BITE.
One night, during a torturous meal of spaghetti and meatballs (translation: practically naked-from-sauce noodles, one sad little turkey meatball that I put on his plate like always, knowing it will be pointedly ignored but "they" tell you to "keep trying!", and a metric ton of parmesan cheese that he deigned to eat granule by granule)...I got frustrated with the stalling and told him I was going to set the timer on the oven. He had 30 minutes. If he finished before that, we'd have time to do something fun, like watch a movie or play a game or have some dessert. He could choose, too.
If he didn't finish, or at least come close, I'm sorry, you're going straight to bed. BECAUSE YOU HAVE A TERRIBLE WITCH OF A MOTHER WHO STILL MAKES BATCHES AND BATCHES OF PUREED BABY FOOD EVERY WEEKEND TO HIDE IN YOUR MEALS AND STAVE OFF SCURVY AND RICKETS.
Ladies and gentlemen of the jury, that child ate every bite of spaghetti. And then he ate the meatball.
In between bites, he would ask how many minutes he had left, nod appreciatively, then get back to the task at hand.
The next night, I upped the challenge with some fish sticks. Noah has never eaten fish in his entire life, nor any meat or vegetable or foodstuff "cleverly" covered up with delicious crunchy breading. (Meanwhile, Ezra prefers them with a nice spicy cocktail sauce.) I put a plate in front of him, and set the timer again.
Five of 'em, down the hatch, like it was no big thing. "I like these!" he announced.
Since then, Noah has eaten -- WITHOUT PROTEST OR ASSORTED STURM AND DRANG -- rotisserie chicken, steamed peas, roast pork loin, mashed sweet potatoes, bison chili loaded with extra vegetables, chicken nuggets, a tzatziki and chopped tomato pita sandwich, spinach linguine and the inside actual cheese part of a grilled cheese sandwich.
Since the fact that he couldn't see the timer seemed to cause a wee bit of anxiety, we upgraded (with his occupational therapist's advice) to a visual Time Timer clock, which allows him to see exactly how long he has left. His beloved Ms. Meredith uses this to help him with transitions and focusing problems during their sessions, so it seems to have positive connotations for him, and holy mother of Timex, he continues to eat anything and everything we put in front of him.
Is it still, at the core, bribery? Yeah, I guess. He does indeed get to choose "something special" when all is said and eaten and done. Some nights it's a cookie, or a lightsaber duel on the Wii, or a boardgame, or a DVD. Which are exactly the things we LIKE doing with him after dinner ANYWAY...but were all precisely the things we weren't doing all those nights he spent sitting at the table for two hours moaning over a plate of pasta, or the nights he was sent to his room for throwing a massive tantrum over our refusal to serve him peanut butter and jelly 27 meals in a row.
In other words, I DON'T CARE. I WIN AT EVERYTHING. I bet u r jelus like a 23-month-old at his big brother's bday party, amirite?
(Yeah, these photos were a stretch in relevancy. But I am feeling gleeful and reckless. I'M CRAZY, MAN. DRUNK WITH TIMER POWER.)
(OH SHIT LIGHTNING BOLTS EVERYBODY DUCK.)
So let me tell you what else was going on last week, now that I can. Now that I'm no longer curled up in an unwashed little ball under the covers. I mean, I'm still unwashed, but it's still better because at least now I'm sitting upright, on TOP of the covers.
You may remember -- or not -- that I casually mentioned awhile back that Jason was sick. A weirdly persistent sore throat turned into the most vicious acid reflux I have ever had the privilege of hearing about over and over again. Having never even HAD heartburn before, he woke me up in the middle of the night to describe his symptoms to make sure that's actually what he was experiencing. I muttered something about having it for nine straight months, grarrrrr cranky smash, and went back to sleep. Since we were at his parents' house, which hasn't contained so much as a single Tylenol caplet since the mid-1990s, he had to go out in search of a 24-hour convenience store in order to find some Tums and Zantac.
They didn't help, so once we got home he went to the doctor. By this point, he was having trouble swallowing and some mysterious back pain at the same time. His doctor didn't like this combination of symptoms and sent him off for an abdominal ultrasound and a chest x-ray. These were scheduled for Thursday, Noah's birthday.
He went first thing in the morning, but around lunchtime they called because OOPS, they accidentally did an abdominal x-ray instead of his chest. OUR BAD, LOL. Come right back. He did. Then I went to get my hair done.
When I came back, he was sitting on a chair in the living room. Ezra was on his lap, Noah was playing with his Legos and being AWFULLY patient for a kid who hadn't gotten to open his birthday presents yet. But judging from Jason's face you would have thought the boys spent the last hour and a half screaming non-stop and attaching fireworks to the dog's tail.
He walked me to the kitchen and delivered the news: There was an abnormality on the x-ray, behind his esophagus.
Usually, I'm good at times like these. I'm good at staying positive. That bad things aren't going to happen because bad things aren't going to happen. Because they aren't! They just. Aren't. I won't let you dwell on the what-ifs. I won't let you talk about how bad the general prognosis for esophageal cancer is because...SHUT UP, that's why.
This time I just sat down and cried.
We took Noah out for pizza and cupcakes, as we'd already promised, trying so very very very hard to focus on his birthday and block out everything else. A simple "How's everyone doing tonight?" from our waiter made me laugh, right before I fought the urge to slide under the table in a pile of boneless goo.
How were we doing? Which disaster do you want to hear about first? Or can I just order the pepperoni?
The next morning, Jason got up and went for a CT scan. He came back and I hadn't moved out of bed. The sitter was with the boys, I was supposed to be working, but I couldn't. He didn't want me to write about him until we knew more, so I just laid there, occasionally fielding text messages from my mom about my dad. Still in the ICU. More tranfusions. It's pneumonia again. Antibiotics aren't working. Diverticulitis in his colon. Congestive heart failure causing too much fluid in his stomach.
She needed me up there, but understood that I needed to stay put. At least until we got the next phone call. We should know something by noon, I told her.
I gave up on working or doing anything remotely useful or productive. I fought the visions of doom and death and widowhood as hard as I could, but I failed most of the time. Cancer was officially coming to decimate my entire family, to trample everyone I loved. It was unstoppable and it didn't matter if you were a good person or a bad person or young or old or had babies or dreams or plans or someone who needed to not ever be left behind. It didn't matter, it was fucking cancer, and it was goddamn everywhere.
Noon came and went. No phone call. Jason called his doctor, then the radiologist. Then we waited another hour before he called again.
"The worst," he said, "will be if we have to wait until Monday to get the results."
"Your worst is better than mine," I thought glumly, but did not say.
Finally, at 4:45, the phone rang. It was neither the doctor nor the radiologist. It was a random receptionist at Georgetown University, calling to let him know that some radiology lab was faxing over his medical information to a doctor that no longer worked there? Over and over again? FYI, and stuff. You should probably call them and make sure they have the right fax number.
"WHAT THE FUCK?" we both screamed in the general direction of the ceiling fan.
A few frantic phone calls later, the doctor had his results. It's a cyst,, she said, a congenital thing that's just gotten really big all of a sudden (six centimeters!) and is pressing against his esophagus and causing all these weird problems. It will need to be looked at with a scope and removed and all that, but. BUT. It's just a cyst, nothing more.
Jason looked at me and gave me a thumbs up. I decided it was okay to leave his side for the first time that day and take a shower, finally.
The next morning we were packed up and in the car, back on our way to Pennsylvania to visit my dad again. During our visit, he stablized, moved out of the ICU and was given hope to go home either today or tomorrow. He's doing better, save for...you know, the dying of cancer bit.
Yesterday was their 35th wedding anniversary.
I don't know what he'll decide to do about chemotherapy, though we had a long, good talk about it and why it's okay to stop. He asked me to promise to take care of my mother and burst into tears, right before his heart went into tachycardia simply from the thought. I held his bruised hand as hard as I dared and crossed my heart with the other.