April 14, 2022

We are officially halfway through Nate's first round of treatment to fight against his glioblastoma!

*insert cheers*

Now that he's on a consistent schedule and medicine regime, he's feeling a lot better than he was when everything was fluctuating as they tried to land on his ideal treatment. Right now the biggest side effect he's dealing with is lethargy. He has a lack of energy that he's never had before, and it makes every little thing harder to accomplish. He says he's sick of having nothing to do and he's bored at home, but he also can't do as much as he used to be able to. He told us he misses having the "dad" role of being the guy who fixes and helps and makes it better. Personally, we think he's still crushing the dad role. Always caring about us, checking in, he puts us above him even when he's going through something so hard. He's still trying to keep us afloat. He's the best dad anyone could have, and we are so lucky to have been chosen by him and born of him, respectively.

He's seen some fluctuation in his weight, but that's likely due to the meds combined with the fasting. He is required to fast before some of his medications and treatments, which obviously throws the meal schedule out of whack, which can affect weight. The fasting is difficult because, after years of working as a certified arborist, Nate is used to waking up incredibly early. Like, the sun and the birds are still sleeping when he wakes up. He's awake for much longer in the morning than most of us, which makes fasting harder than if he were just sleeping through it. He's also dealing with some hair loss from the chemotherapy, but that's better than dealing with pain. Ultimately the side effects could be much worse.

We have had a pretty huge blow, though. After seeing the optometrist, Nate learned that he's lost half of the vision in his right eye, and a third of the vision in his left. His eyes are perfectly healthy, but the pressure in his brain is restricting the ability of his eyes to do their job. (Editor's note: this is not well explained, but I'm not a doctor. Trust me: brain pressure = less eyesight.) This means that he can no longer drive, which further limits his ability to get out of the house. Reading and writing take exponentially longer than they used to - and he was always the last in the house to read the newest Harry Potter book, so you know he's never been a speed reader. It's the cruelest irony that Nate has this cancer, because he's such an intelligent man, and so proud of his speaking and writing ability, and this is affecting all of those things. He also keeps missing things in his blind spot, which is frustrating. He said he no longer "looks" for things, he has to "scan" for them. The doctor's have said that if they can get the pressure in his brain to go down, his eyesight might return. 

Nate is staying as active as he can in the house, and does a lot of chores to satisfy that need to move. The doctor at Dana Farber asked if he was working out, and was impressed by the amount of exercise he is getting. The minimum they were hoping he would move around was three times a day for ten minutes each, but we all know Nate. He has a lot of energy to kill. He's also had a lot of visitors, which helps keep him busy and passes the time. It's bittersweet, because the reason for having these visitors is pretty awful, but he's seen a lot of friends and family of late. His father has come to visit a couple of times, and his cousin who lives in California. It's nice to see people who care about him, despite the reason.

Nate and his dad John, with their matching slacks and matching faces. 
(youngest chiming in, the cotton genetics are strong, trust me)

 

Right now, everything is working towards assessing the treatment. We are waiting to see what happens. After 56 years of life, Nate has learned not to stress about the things he can't affect, because it's wasted energy. 

"The problems that I have, I can't really do anything about, so why sweat them?"

(Editor's note: I'm sweating them. Drenched in sweat. Hopefully in 30 years I will learn to adopt dad's mindset.)

While we were discussing the past couple of weeks, Nate compared himself to a tree with dutch elm disease. Always trees with this guy, right? He said when a tree is diagnosed with dutch elm disease, first you have to cut the dead wood out. Then you inject the medicine to stop the disease, you feed the tree, and then you have to wait and see if it worked. There's no way to tell until the tree gets better or worse. That's where we're at right now. As Nate put it, "I don't care what the problem is, I just need to know the solution."

The official diagnosis right now is incurable, but treatable. (Editor's note: the difference between a terminal and incurable diagnosis is that if he's terminal, the insurance company won't pay for his treatment - why try to cure a dying man - but if he's incurable the insurance company will keep paying. The health insurance industry is a scam and a soul suck.)  It's something he'll live with for the rest of his life, but we keep fighting. He's held onto his good spirits about it all despite everything that's happened thus far. One of his oncology doctors actually asked if he could do a clog dance because he wears clogs to his treatment, which he was delighted by. His normal dance is the dance of the dying goose, not the clog dance, so he said no. But he stays motivated and fighting, and some days it feels like he's dragging us all with him, but we try to stay positive too. 

"When you start [life] you get two jars: one empty of experience and one full of luck. As you age, the experience gets full and the luck gets empty."

Once we gain the experience in finding which treatment works, the luck will jump in and help us fight.