Lost time is not found again *

The week was lost to illness, but at least this time it wasn’t mine. Young A came down with a fever last Friday, and it lasted a full week. Young J joined the fun on Wednesday. 

The kids were also off school Tuesday for a blizzard that turned into a colossal ice storm — not a fun snow, but the kind of event that just unleashes ice down which then stays put for ages.

Today, at last, Young J got his nose swabbed, this being the result:

We’d been fearing strep (and Young A was taking antibiotics for it) but we were wrong. The flu vaccine fell short this year, it seems. Now J and I are on Tamiflu to try to save us from kids’ fate, and Young J is on it to hopefully shorten the course of it. The Internet helpfully taught me that Influenza B is present only in humans and seals. I need to tell this fun fact to the kids. Young J briefly sounded like a seal last night. (Do seals with the flu sound like people?) One thing is clear: My kids do not get sick often enough (knock wood). They don’t have a lot of coping mechanisms, and the first few days home they were incredibly restless (before I gave up on any rationing of “screen time”).

I had my own little medical drama this week when my cancer med refills failed to arrive due to the ice storm:

They finally showed up two days late, and luckily I only missed one dose. Next time, I’ll plan ahead for the unexpected, like an ice storm in April. Of course.

It isn’t fun to think about medical fails like this year’s flu vaccine. It gets me thinking about how far we still have to go before people can stop dying from what I’ve got. I’m thinking of Emma Betts in Australia tonight. Her father has been updating her Facebook page, because Emma is now in hospice. She and her husband just celebrated their third anniversary.

I’m also thinking of my overseas correspondent, whom I checked in with earlier this week after a few months, and learned that she is being treated with immunotherapy for metastases to her liver. I’m thinking of her as well.

Seeing a photo of Emma and her husband, with a cake the hospice staff prepared for them, took me right back to my and J’s tenth anniversary, when I was so sick from ipilimumab-induced colitis. I couldn’t have known then that I’d still be here now. 

Every day I am still here requires a good deal of mental effort, because there is always the sense of things suddenly going wrong again. That is what PTSD will do. Sometimes, it’s a sword that dangles jovially above my head, in my peripheral vision. At other times, I actually might look up, because I’m sure it’s a giant anvil coming down to flatten me, like in the cartoons of old.

I got to speak with Nurse Practitioner K today, because I wanted to be sure it was safe for me to take Tamiflu. Whenever I call the office, I’m very conscious of the time I’m taking away from patients who are there in person, and I try to get off the phone as quickly as possible. K isn’t like that, though — she asked how the boys were doing, how I was. I’m so lucky to have her caring for — and about — me.

It’s the weekend at last. Most of our plans have been undone by the family plague (I feel myself almost on the verge of succumbing to flu B, now that J is on the scene to take over kid duties). I can’t say I mind having no plans. We can all sit together in the cluttered living room and (re)discover another great old film together. (This week, we watched Hello, Dolly! and Desk Set.) Or play Scrabble, Young A’s latest obsession (he’s awfully good). I love to travel with my family, of course, but if I had to go tomorrow, it is these scenes of messy domesticity I would miss more than anything.

If you’d like to sponsor our 5K walk for cancer immunotherapy research this year, you can do that here.

* Lyric by Bob Dylan.

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