Tuesday, June 4, 2013

Why May was Weird

Also why this blog has no transitions. Because the inside of my head–not a placid spot on good days–spun into manic overdrive these last five weeks and now I can only grab the thoughts that throw themselves off the merry-go-round as they come and pin them here before they fly away. 

Want to know what it's like in my head? This clip from BBC's Sherlock is a pretty good measure (in frantic speed, if not the quality of thought!)

As I said, that's on a good day. But beginning April 30, I wasn't sure when I would have an unqualified good day again. On that day, Jake had his normal scans at Boston Children's Hospital and Dana Farber as part of his four-years-and-counting post-cancer care. He's had thirteen of these scan appointments since November 2008 when he came off treatment for rhabdomyosarcoma and every time I'm anxious. But every time the answer is the same: Looks great. Go home and we'll see you in three or four or six months (increasing periods as time passed.)

On April 30, the answer was: Don't worry. But there are aspects of the MRI of the original tumor site that we're not sure about. But don't worry. Also there are a couple of raised lymph nodes under the arm. Nothing to worry about. We'll take the scans to our weekly Tumor Board meeting where a bunch of our specialists can weigh in. We'll call you. Don't worry.


So we came home and didn't worry openly. Part of that "not-openly" meant we told almost no one. Pretty much Jake, me and Chris, and grandparents. Not even his siblings, because there was nothing to tell yet so we didn't tell anything. Tumor board is held every Tuesday, which meant the first chance for his scans to be looked at was May 7. If they had emergent cases, then his consult would get pushed to May 14–which also happened to be release day for The Boleyn King. Irony, much? Fortunately for my sanity, Tumor Board got to his case on May 7 so I didn't have to spend the 14th pretending I wasn't waiting for a call from Boston Children's while touring Utah bookstores with my friends playing Spot Laura's Book.

On May 7, the word was, once again: Don't worry. I'm not worried (said the doctor). But the consensus is we want more information. So Jake will have a PET scan on June 4.

Want more irony? June 4 (today) was my original release date for The Boleyn King.

A PET scan uses a radioactive isotope to track, in this case, glucose uptake in the body. Since cancer cells use glucose differently, areas of activity (which is not always cancer, but certainly what we were looking for in the original tumor site) light up on the scan. It would tell us if the "unusual characteristics" of Jake's original tumor site were due to a relapse. And in case you're lucky enough not to know, relapses are never good. Treatments get harsher. Odds go down.

Remember that Sherlock video above? On my good days, this is an example of the constant dialogue in my head: Did I buy milk? Where's the bear in our woods hiding now? I loved that scene in King Hereafter, how did Dorothy Dunnett do that and why can't I figure out how to end the Boleyn King trilogy and what if Kate hates it and this is the book that kills my career except that could be the first one because they've invested so much money and time on me and what if they're disappointed and I've got to do laundry tomorrow and I've lived here two years now and still haven't planted flowers and why, oh why, do my medications insist on making me gain weight and I haven't called my parents in weeks and weeks and it's almost my friend's birthday and I haven't done anything for her yet and is my son in Seattle eating enough? 

This is how May went in my head: Holy crap, my book is being read by STRANGERS and now I have to talk about it and I sound like such an idiot on phone interviews and someone wants to film me and I need to buy theater tickets for when Jake and I go to London in July except what if we don't go to London because he's relapsed and I've done this before and chemo and doctors and baldness and he's about to be a senior in high school and applying to college and THIS ISN'T FAIR and no, I won't be gracious this time around, I will be awful and angry and book three has to finished before June 4 or I may never have the chance to write again, not that I care because who cares about writing--except I DO CARE! I care desperately about people reading my books and I've waited so long for this and now it's all mixed up with my child and nothing else will matter ever again if he's sick and I have got to go to sleep or I'll never be able to do anything tomorrow and did my other children do their homework and when was the last time I fed them something other than take-out but who cares because on June 4 MAYBE NOTHING WILL EVER MATTER AGAIN!

I've been pretty tired.

Here's what matters: today's PET scan showed absolutely NO activity in the original tumor site. I started breathing for the first time in five weeks when the doctor told us that. The lymph nodes did light up, but almost certainly it's due to some kind of infection, probably low-level. We did blood work today and Jake will have an ultrasound of the nodes in three weeks. One end point is a possible biopsy, assuming they don't resolve and there are no indications of infection. But this time, when the doctor said to me Don't Worry, I believed her.

Which means tonight my chattering mind will–if not fall quiet–at least return to more mundane matters like weight and career and the lack of flowers in my yard.

And tomorrow I will buy those theater tickets. Because for ten days in July, Jake and I will take London by storm and I plan to enjoy Every. Single. Second.

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