Running Update:
3/29 19.6 miles in 3:25:11
4/2 7.6 miles in 1:12:59
4/4 5.0 miles in 47:16
4/6 15.0 miles in 2:27:01
4/9 3.2 miles in 28:41
4/11 5.0 miles in 45:36
4/13 7.6 miles in 1:11:03
4/16 3.1 miles in 32:59
Done with the taper—only three days until the Boston Marathon!! I can’t believe how nervous I am, despite
this being my sixth marathon and my second in Boston. I don’t know how I am going to react
physically and emotionally to being back in Boston for a marathon. There is no denying this is going to be an
historic event! I wish I had some profound
comments to make—perhaps after the race.
Meanwhile, I bring you a collection of miscellaneous items that haven’t
made it into my other posts…
Running-inspired
songs from my playlist, volume 3
(To
see vol. 2, see my blog entry from 9/2/13.
To see vol. 1, go to my original blog, and read the post from 3/22/13.)
Nonono “Pumpin’
Blood”
Key lyrics: “It’s your heart. It’s alive. It’s pumpin’ blood.”
Matt
& Kim “Good Ol’ Fashion Nightmare”
Key
lyrics: “Your left foot in front of
right.”
OKGo
“This Too Shall Pass”
Key
lyrics: “Better run like hell when you
hit the ground.”
NF Update:
We’re about to complete cycle 2 (eight weeks) of AZD6244 and Jane is still
tolerating the medication fairly well.
It has done a number on her skin (awful itching, rashes) but nothing
more.
At one of Jane’s recent specialist visits:
Intake Nurse: “Under ‘medications’ you wrote ‘AZD6244 twice a
day by mouth’. Do you know the dose? We
really need to know the dose of her medicines.”
Me (what I am thinking): Are you kidding me? I told you it was experimental. NOBODY knows the dose of this medication. I could say 140.6 micrograms and it would be
meaningless to you.
Me (what I actually say): “Two tablets.”
Jane Update:
Happy news—Jane turned seven! We had
a celebration at home with family on her birthday, then had fun at a party
with friends a few days later.
 |
| Jane in the Birthday Girl Throne |
 |
| Party birthday cake |
 |
| More birthday wishes at home |
And
finally, a snap-shot of recent Wednesday…
My Day Off, part II
(To see part I, go to my original blog, and read the post from
2/27/13.)
6:15am
Rise, dress.
6:30am
Wake Jane to take her medication, then tuck her back in to sleep.
6:30am
Wake Helen and Alec, prepare breakfasts, make coffee, pack lunches and
backpacks, get Helen to bus for 7:30.
7:30am
Wake Jane. Ensure that Alec and Jane are
dressed appropriately and fed.
8:15am
Get Alec to bus.
8:30am
Bring Jane to pediatrician for clinical trial-mandated biweekly check-up.
9:15am
Bring Jane or clinical trial-mandated biweekly blood work.
10:00am
Check Jane into school. Meet with Jane’s
teacher, principal, reading specialist, and school nurse to update them
regarding Jane’s status.
11:00am
Remain at school to help out with Reading Centers in Jane’s class.
12:00pm
Back at home, inhale lunch.
12:30pm
Run 7.1 miles, shower, change.
2:30pm
Return e-mails, return calls for work.
3:30pm
Pick up kids from school, supervise the start of homework.
4:30pm
Bring Alec to swimming lessons.
5:00pm
Help Helen make red velvet cup cakes with cream cheese frosting for a school
event. Prepare dinner.
6-6:30pm
Dinner. Must finish dinner by 6:30 so
Jane can take her medication on an empty stomach at bedtime.
6:30pm
Clean kitchen, supervise more homework, piano practice.
7:30pm
Baths for kids, bedtime stories.
8:30pm
Tuck kids into bed.
9:00pm
Evening computer work: review test
results, prepare charts for office tomorrow.
Update blog.
11:00pm
Collapse into bed.
Next
post with be after Boston! I hope to
have a good report and lots of pictures :)
Just wanted to say hello. I found your blog while trying to gather any information AZD6244 trial for PNs. I'm hoping they'll open the trial up to adults too in the future once trial enters PII. Sounds very exciting that all enrollees had regression and I'm glad to hear Jane is having minimal side effects (in the grand scheme).
ReplyDeleteI was in the Gleevec trial but had to drop out due to a new-onset seizure. (never happened again since) Figured out later on it wasn't gleevec at all but another rx (switched from brand name to generic) I was on known to lower seizure threshold. The generic version wans't properly tested, and released the full 24-hr dose in 4-hrs. Sorta have negative feelings toward that generic company for getting me kicked off the trial, not that I know for sure I'd have benefited...
Thank you for writing. Good luck in your search for a better treatment! I will keep posting our experiences with AZD6244 and hope it will be helpful to you.
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DeleteHey there
DeleteI found a powerpoint slide file with some info on phase II of the trial (I think it was either for general update w/in the pharma co. or for investors) so I can share that with you if you want. I don't remember the link I got it from -- Otherwise I'd just share the link. LMK my email is greenmnm.jin at gmail