Calming down, looking up

It’s Saturday afternoon and all is quiet around here.  Which is good, because the three H-Bs in residence are beat!  All day yesterday and until 2 today we were spending time at Simon’s Rock learning about their new Bard Academy program for 9th and 10th graders, in which Jesse is now (as of this afternoon) officially enrolled for the fall.  Jesse will be a day student for 9th grade, though most of the students enrolled so far are boarding.  20% will be day students.  It was all exciting stuff but it was tiring to be outgoing, social, and attentive for so long at a time.  We’re excited to know what Jesse is doing in the fall and to feel more sure that this will be a good program for them.

I felt a bit undercover in that context–with my thin but “passing” hair, my shirt covering my port and my compression sleeve (to prevent lymphedema in my still-somewhat-swollen left arm), my many scary medical appointments and procedures lurking in my recent past and even more immediate future, my low energy and physical fatigue bolstered and covered for by Eric…meeting all these new people and having all these parts of who I currently am be hidden away while trading basic information with other parents, with Simon’s Rock (early college) students, with faculty and staff.  All while thinking about whether this was the place, the context, the culture, the institution, the people where Jesse would get what they need if and when I get sicker and sicker.

So.  Now we’re home.  The last week has been one of slow improvement.  The Neurontin seems to be working pretty well on my leg pain and I’m down to 3 morphine pills over the last week.  I’m doing my PT exercises twice a day (30 min at a stretch), struggling to find energy for a walk as well, doing qi gong sometimes too.  My brain is back somewhat in shape because: no morphine.

The weird thing about the Neurontin is sometimes I feel messages from my knee that feel very–the only way I can describe it is “wide,” like of large amplitude, but they are kind of empty rather than being full of pain like before.  Very strange.  Also my legs feel very noodle-y and weak, like I just hiked 20 miles or had a big scare.

So, Tuesday is my brain zap which means Monday I have yet another brain MRI.  Tuesday I’ll be there from 6:30am until probably 3 or 4 pm, spending most of that time waiting around in Radiation Oncology’s very cozy “living room” with Eric or whoever else comes to keep me company.  They better not be easily weirded out, because by 7 am I’ll have a metal “frame” attached to my head to allow for very precise zap-targeting, and it stays on all day between the early morning when they put it on and do a CT scan of my head in it and the afternoon when they do the zapping.  In between they merge Monday’s MRI with the CT scan and do the planning, which means designing the radiation beams to go in various parts of my skull and cross over in the tumor.  They are powered to only do damage where there is more than one at a time–where they cross.   The location of the tumor is tricky so the frame is needed to make sure I stay the most still possible.  When using the mask, as in my previous two zap adventures, they build in 1 or 2 mm of marginal zap zone to make up for the bit of movement possible in the mask.  This time that’s not a good idea.  So I’ll have the frame attached to my head.  I will spare you the pictures because it looks kind of scary, though the neurosurgeon assures me that people are way more freaked out about it ahead of time than after they’ve had it on for 10 minutes.  Basically it’s a metal structure that will kind of orbit my head and face, held to my head by pins that are tightened down to my skull in two pairs (front & back), kind of like little clamps.

Sounds fun, huh?  I think I’ll just rest up between now and that next adventure.

6 thoughts on “Calming down, looking up

  1. David


  2. Shelly

    The whole thing sounds very science fiction–might be neat if it weren’t required by something so basically awful as cancer. You are very brave in this “brave new world.”

  3. Dee

    Love and Light: may the zaps do what they’re s’posed to do!

  4. Wish I could be there to keep you company. I’m pretty sure I can handle the cage.

  5. Alice Raymond

    The Bard Program which Jesse will attend next year sounds great, & I hope it meets all of your expectations (& his!)

    I echo Dee’s “Love & Light” comment & her wishes for the zaps to work well.

    I will keep sending as much good karma as I can muster!

    Lots of love –

  6. Marcy

    i love you. that is ALL ??

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