Starring the Three Stooges!Posted on Sun, Jul 20, 2014
Dear Family and Friends,
Happy Summer! I am past due for sending out an update. When last we left our Super Secret Agent Pirate, he was running amok Arrr-ing and avast-ing on the streets of New York. Have no fear, I have resumed my former incognito Super Secret status, as I no longer am required to wear the eyepatch! The streets of New York are safe again!
My vision started to improve a few weeks after we rapidly set up my emergency radiation therapy in January. After a little more than a month, I was able to see again with both eyes. I think there’s still a residual effect, but only if I look to my extreme left. As the joke goes: “Well, then don’t do that.”
A really fun part of that process was being put on double-dose steroids for the whole month, which helped save my optic nerve. I could not stop eating. Seriously, seconds, thirds, snacks…. I also had to keep tight control of my emotions at work and at home. Sometimes, I would just mentally dare people on the subway to give me something to yell at them about. “Yeah, I’m sitting down on a crowded car. You want to make something of it? I have cancer, whaddayou got? Thought so. Keep walking’ hero!” The steroids were necessary, but it was quite the ride. I don’t know how I would have fared without Kristin’s support and understanding.
I haven’t sent out an update since January because my treatments the last few months have been an ongoing process. Once we made sure there was nothing in my head (something my sisters have been saying for years) only 3 small tumors in my lungs remained. I have named them Larry, Moe and Curly because they haven’t grown much at all, which makes them pretty incompetent as tumors go.
The reason for that? I am doing a “maintenance chemo” where I get a low dose of chemo on an ongoing basis – every 4 weeks. But not just any chemo: Doxyl! As I said in my last email, the Fun-Loving Nephew Doxyl of the Sleazy Uncle Doxyrubicin is no longer experiencing a nationwide shortage, and so it is on like Donkey Kong! Imagine one of those drug ads where people are randomly cavorting on the beach in slow motion and you never really figure out what the thing they’re selling does. That’s sort of how I feel about it.
I’ve been on this chemo since mid-February, just had round 6 last Friday, and so far, so good! I do have side effects, but I’ll spare you the sordid details. Considering last year I was flat on my back with Ifosomide, I really have nothing to complain about. My energy level is up and down, but my immune system is still going strong. Fun side effect: I’m photo-sensitive. I can’t be out in the sun for any length of time. We went out to the Mermaid Parade (because no way was I missing that) but I sure felt it the rest of the week. Go figure. At least I still have my hair! Or, you know, what there is left of it…
The whole point is just to keep the Three Stooges contained and keep anything else from popping up. It seems to be working as advertised, so we’re planning to stay on this course for the foreseeable future.
My girls are amazing, our family is thriving, and while I can’t go out in the sun, we’re having a fabulous summer! So much love to you, each and every one of you! I hope all is well, and you are wearing sunscreen.
Yo ho ho and a bottle of water,
– Ben
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