Wednesday, September 7, 2016

The last three days of summer 2016

The last three days of summer were pretty crazy-making for me, since I'm trying to run the Anderson Family Circus. Being the Ring Leader of a saucy almost second grader, a special needs almost 10 year old who's been homeschooled for the last year and a half (hyphens deleted intentionally, obvs), and taking care of my husband, who's a stage four tonsil cancer patient is a huge responsibility. Especially for a woman in a male-dominated field, which is what my home life is like. I'm the only female human in my home and the past week was pretty full of emotion. No, I'm not premenstrual; I don't get my period anymore, it was a chemo perk.

On Monday (Aug 29) I, the Ring Leader, took the monkeys boys to school for a visit to Nathan's Sped (Special Education) classroom.  But we call it the Resource Room, because times change and things are labeled differently now than they were when I was in grade school, and also, the staff who work in a Resource Room have got to be resourceful. Duh. And they gotta be clever and quick and think on their feet faster than Lightning McQueen. And a Resource Room teacher may only have 12 kids in that Resource Room, but trust me when I tell you it feels like a lot, and I mean a whole fucking lot more kids. It's like having 36 neurotypical kids. Seriously.

During our visit with the teacher, Nathan did really well during the 90-ish minutes he, Isaac and I were at school. And it was late in the afternoon. Like, we got to school at FOUR. And for us, doing something late in the day is a big deal, because it can interfere with our bedtime routine, which is sacred in an autism home...for the brief bits of sanity I have remaining. Nathan was both excited and nervous, which are all normal emotions for kids--and adults--at the start of the school year. But, he also had some confidence in that Isaac and I were with him.

Tuesday (Aug 30) I took the boys to Hapkido, and they had a lot of fun! We are all thankful Mrs. V supported the boys being together in the homeschool class this summer, which enabled me to cut down on the number of trips into town, which ultimately decreased my stress and the amount of pressure I have upon me.

Wednesday, (Aug 31) the day before school started was interesting in that Randy came out from the bedroom and said "I'm telling Dr. Chryiath I'm done with chemo." And I was like, "um, ok...." because, really, this wasn't at all on my radar, and not what I expected my husband to say first thing in the morning, especially since I was prepping for my day, which involved taking the boys to school for a visit; and it's an open all 500 kids will be there, with their parents. My stress level was already pretty elevated. And I needed to prep food and clothes and boys: I was moving in a completely different direction than him. So, I was not prepared for what he said.

But here's the deal, Randy made an important decision, that kept him awake much of the previous night, which is known as Chemo Eve (and is NOTHING like Christmas Eve, or even Birthday Eve. No. Very different, indeed!), and he didn't take this decision lightly. He was going to the Cancer Center Wednesday morning knowing that he was having a doctor's appointment, but that he wasn't going to have chemo that day because when they drew blood for labs on Monday, it turns out his platelets were low. Platelets are in your blood and are responsible for clotting, and if the platelet count is too low, they can't administer your chemo because bad stuff will happen.

The thing is, is that for my husband's tonsil cancer, the primary treatment was radiation. And the chemo, which was supposed to be three doses, 21 days apart, was given as a booster for the radiation. And he completed the radiation treatment on August 26th. His chemo was not considered a systemic treatment; it was considered a targeted treatment, because they were going for the throat (if you will).

So, he asked our medical oncologist, and she agreed. Mathematically, he ended up doing about 75% of the recommended dose, but the caveat is that, again, his chemo was a booster for the radiation; they worked together to kill the cancer cells. And so with the doc's blessing, as of last week, he's done with chemo.

But he's not completely done (seriously, this is our life). He still has to go in for fluids three times a week because the type of chemo that they gave him was very dehydrating, so they hydrate him. No, it's not that simple for him to increase his fluid intake; he isn't consuming anything but a few sips of water in a 24-hour period; all foods and fluids and most medications are being put in the G-tube. So, when he gets fluids, he goes to the Cancer Center (or the hospital) and they hook the PICC Line in his arm up to the IV machine, and he gets a liter of saline infused into his body, and it takes about three motherfucking hours. They have to hook him up, start the drip, and then unhook him. And then, because he's got a ton of fluids in him, he's up peeing for about 15 hours afterwards.

But he may be done with getting fluids on Friday, 9/9, which is Nathan's Birthday Eve (no pressure, dude, for reals). The discussion today (Sept 7) with the Physician's Assistant (who is lovely) was that he would see how he's feeling and if he feels like he needs more fluids next week, then he'll get to the Cancer Center for more fluids, but if not, then he he won't.
But the thing is, is that HE made the decision about stopping! And I am really really proud of him for that!!!!

HE felt strong enough and courageous enough and empowered enough to say to a medical oncologist, "I'm done. I am scheduled to have two more chemo treatments, but it's not going to affect the outcome because I am done with radiation and why am I prolonging just feeling like shit?"

Culturally, we perceive physicians to be omnipotent deities. We think they know best. And, yes, a doctor definitely knows a LOT about the body and if they're a specialist, like a medical oncologist, they are oftentimes presented in film or books as these highly emotionally distant people, who are probably on the higher functioning end of the autism spectrum. But, I can tell you that when you get a good doc, which my family is both fortunate and thankful to have...the good doctors...they listen to their patients, they recognize that they themselves are human, they are willing to think outside the box, and they are likely to check on you when you are in the hospital for an unexpected overnight visit, they are compassionate...and they truly care about their patients as people who have lives....these are the doctors that I want to work with on staying healthy and keeping my family healthy.

And, let's face it, from the beginning, one of the things I was trying to teach Randy Anderson was that he needs to listen to his body and advocate for his own health. For nearly twenty years, I've been teaching students to do this for themselves...and I think some of them get it. I'm thankful that Randy was able to effectively communicate what his needs were to his physician, and that she listened and agreed with him.

The final thing that was also huge about Wednesday last week, the last day of summer vacation, was that I spent a good part of that cold, wet, grey day prepping the boys for Thursday, which was the first day of school. I pepped a lot of food, so I could make the first two days of school easier on me, since I was not simply dropping them off. I was planning on being at school, primarily supporting Nathan as he transitions to the classroom, since I was anticipating a rough start. I also had them pick out their clothes, made lunches, and pack backpacks. You know, all stuff "normal"families get to do the day before school.

Wednesday I also took the monkeys boys to school for a visit...the one that was the open house...and there were a LOT of kids there. But we Andersons did really well. And we were excited to get back in the classrooms. And we each got an ice cream cone on the way out (thank you PTO!).

So, the last three days of summer 2016 were pretty big for the Anderson Family Circus. And we never have to live those three days again. It is behind us; we are moving forward.

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