Joy, Sorrow, and Miscellaneous

The Joy

About 3 months ago, Alex started a new medication for his tumor. It’s a drug called nirogacestat.

After a bit of a hives scare, we got the right regimen working and it has had WAY less side effects than what Alex had been on in the past. A bit of fatigue and some nose bleeds — but very manageable.

But was it working?

Well, we had our first MRI and ladies and gentlemen…tumor volume has reduced by 80%.

I repeat…tumor volume has been reduced by 80%.

The Sorrow

In December, my Uncle Bob died.

He was one of the most important people in my life. We’d been close for…well, 51 years. He died of brain cancer.

I got to spend a lot of time with him at the end. But more importantly than that is that I spent a ton of time with him over the years. We’d go spend a weekend in Boston with him at least once a year for the past 25 years.

In April my family, my brother’s family, our Aunt Joan, and Marie (mother of my heart) spent Easter weekend together in Boston. Bob’s decline was evident. He was always an active, almost hyper host, and he was deeply stressed out at not being able to take care of us all. He was trying to cook a ham and really struggling. It made the whole weekend a little tense.

But after Easter dinner we sent the kids to the living room to play cards and the “adults” let the wine flow quite liberally. Bob sat back and let us serve him (a lot). Time and life glowed as we all sat laughing and reminiscing.

We had a beautiful celebration of life after he passed, and now we’re still working through it all. It’s brought me, my brother, and my Aunt Joan closer as we let go piece by piece. It sucks. Here’s his obituary which I really loved writing.

The Miscellaneous

I’m now officially on the School Board. That’s been exciting. I’d say I understand about 40% of what is being discussed at the general meetings and about 25% of the discussion during the policy committee meetings.

Finally, Jack Nuckols is going to spending the summer in New York City. We were texting about it the other day when he realized how many Yankees games he would go to. Then it dawned on him that he was going to be a bleacher creature — and that was pretty exciting.

OK…that’s the update. figured it had been a while.

Here’s a bunch of shots from the last few months.

One thought on “Joy, Sorrow, and Miscellaneous

  1. Omg, SO happy to hear about Alex’s new tx working so well. Been thinking on you all a lot. What a beautiful obit you wrote for your beloved Uncle Bob, and loved the image of the “glow” when you all were having wine and convo. I could picture the scene – like slowly burning embers into the wee hours. Thank goodness for you and your writing.

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