I’ve worked as a writer in healthcare marketing for 25 years. I’ve written hundred of brochures, websites, and sales tools about dozens of different drugs. And when it comes to side effects, you really aren’t allowed to say much. The FDA is very particular about overpromising tolerability. So most of the time you just say that the drug is “generally well tolerated.” In fact, I’ve typed those words literally thousands of times.
But now I’m watching Alex live those words and it’s altogether different.
He’s now on a drug called Pazopanib (Votrient). Here is his tolerability report.
- His hair has turned white, which is pretty bad ass.
- There was immediate weight loss. He lost all desire (and joy) for food. He dropped about 10 pounds. So we saw a nutritionist and the doctor put him on medical marijuana (pill form). We stuffed our fridge with ice cream and Ensure shakes. And he started to gain some of it back.
- Diarrhea. Not too bad, but pretty much the everyday norm. It’s “generally tolerable”, but it has kept him home from school a few days because he’s made it clear he’d rather die than use the high school bathroom.
- Then, around 10 weeks in, the pain started. Hip pain so he walks like a marionette and has to use his arms to get himself in and out of the car. Wrist pain that affects his ability to write and take tests. Even occasional jaw pain to the point that he had to have smoothies for dinner because it hurt too much to chew. Hiking is day to day. Backpacking and diving are out of the question.
- Because of all of this, they have reduced his dose. The pain is still there, but much reduced. His shit is suddenly solid again which came with 3 days of brutal stomach pain.
Part of what’s so hard is that it keeps changing. It’s inconsistent. You can’t get into a routine where you know what you’re dealing with and how to handle it. He’ll get three days in a row when he’s pain-free and he thinks he’s figured out the right routine of stretching and then BLAM he’s floored for 2 days straight. If I’m being honest, it’s wearing all of us down.
But there have been some good things too.
In January, the MRI showed that the tumor in his leg had shrunk 49%. That was a night for champagne and sparkling cider.
We finally got the results from his genetic testing (which had been hanging over our heads for months). Desmoid Tumors sometimes come with a genetic mutation called FAP. If you have FAP, you are 100% certain to get colon cancer before you turn 30.
So in January they called us and said: “We have the results. We’d like all of you to come in as soon as possible. You’ll meet with your oncologist and then a team of genetic counselors.”
That was a grim drive to CHOP.
But when we got there, they told us Alex did NOT have the FAP mutation. He had a different one that made him slightly more likely to have colon cancer and he should start testing at 40 (instead of 50). No big deal at all. They had called us in because they didn’t want us to read the results ourselves and misinterpret them.
Then the doctors left the room and I went over to Alex, buried my head in his lap, and absolutely sobbed for a solid minute.
And we broke out champagne and sparkling cider again.
It’s been a haul. I thought life would get easier with only one kid in the house, but things have taken a pretty crazy shift.
It’s Sunday as I write this, and Shani and I are home alone. Jack wrote us Thursday and told us he was coming home from Fordham for the long weekend. He announced that he and Alex would be taking the car on Sunday. So now my boys are off somewhere blasting through Pennsylvania, listening to music, talking about God knows what, getting ice cream on my credit card.
That actually might be about the most joyful thing I can imagine.
On top of that, Shani’s parents are coming over for dinner tonight. Covid has derailed things, but tonight the six of us are finally going to have a meal together. I have a fire going in the fireplace. The dog is asleep against my leg. I’m in love with and deeply appreciative of my wife, who is reading a book by the fire.
Life is weird.