Sunday, June 30, 2013

Running update: 
6/26  5.0 miles in 45:19
6/28  5.0 miles in 47:57
6/30  8.1 miles in 1:12:23—the entire run to Cameras by Matt & Kim on repeat.
Was emotionally and physically exhausted after our trip to IU and alone with the kids on summer vacation, but had to get back to training on the 26th.  Who else do you call when you need a last minute sitter for a few hours so you can go running?  Your Mom!  A nap, a Power Bar, and a cup of coffee, and I was good to go.  (Thanks, Mom!)
I am at 503.0 miles for the year, aiming to run 1000 miles in 2013, so I wanted to get to the 500 mark before July 1st.  Yay!

Jane update: 
Jane has finished Kindergarten!  We had her end-of-year celebration before our trip to Indiana, so thought I’d share some photos.  We are so proud!  The event included a display of the children’s paintings based on the works of Picasso, Rothko, O’Keefe, Pollack, Mondrian, Kandinsky, Warhol, and even Damien Hirst (spot paintings only!)  Aren’t her teachers wonderful?
The installation included busts the children made of themselves:
None of the busts are perfectly symmetric, but I couldn’t help being struck by the shape of Jane’s.  I don’t think it was intentional, but it does make me wonder how she sees herself.  I also often wonder how others see her.  A good friend recently commented to me that she was speaking about Jane with her 8 year old son.  My friend mentioned Jane’s tumor, and her son was puzzled—he hadn’t noticed it.  It seems lots of times children don’t.  Meanwhile, I see adults turn and stare at Jane all the time.  (I don’t blame them—it’s only natural to look twice at something you don’t usually see every day.)  And people often tell me they recognize my “family” when the kids are around town with others, and I’m sure it’s because of Jane—I don’t think they’re otherwise that distinctive.

NF update:
This video was created in honor of Jane and me by Sarah Coulam, the director of the NF Endurance Team.  We are so lucky to have her as our leader!  Sarah's video for Jane

Helen update:
More props to my eldest:  Helen finished 5th grade with high honors in every trimester!

Monday, June 24, 2013

Jane update:
While on our way to Riley Children’s Hospital for Jane’s MRI this morning we saw the gorgeous super-moon still in the sky even as the sun was rising.  Jane is such a brave little girl—met six different hospital staff and was examined by two different doctors all within about an hour of waking up.  Her patience reached its limit when she was asked to change into the hospital gown (the nurse relented), but she didn’t shed a tear.

After the test Jane came out of anesthesia more slowly today than usual.  Even three hours after the procedure she still didn’t want to sit up, and when she did she threw up!  Apparently (I learned later) she's been given IV Zofran, an anti-nausea medicine, preventatively in the past, but this anesthesiologist didn't give it :(  We’ve heard that back at home Yale has an MRI simulator for kids to practice lying still in so they don’t have to go to sleep for studies.  Usually it’s for older kids, but we might have to look into it for Jane—this anesthesia thing is a drag.

In the end, relatively good news!  Jane's tumor has "only" grown 10% since last visit, so it is actually considered "stable".  We’ve been told Gleevec can take as little as 4 months or as long as 8-12 months to take effect, so we can still be hopeful.  I am actually quite pleased--I was convinced we were going to find the tumor had grown more than 20%, in which case we would not longer have qualified for the study.  (Seems crazy that we consider it "good" even though the tumor grew...)  As it is, we'll continue Gleevec for now, and return to Indianapolis again in 6 months.

Back at the hotel this evening we celebrated.  Jane played a bit with her new stuffed animal, a kitty we named Marshmallow.  Even before the trip she had told me she wanted a kitty stuffed animal from the gift shop after her MRI :)  We bought little presents for her brother and sister today, too.  Had a swim in the hotel pool then treated ourselves to the Steak 'n Shake, Indianapolis!  Jane was one hungry little girl—she devoured her dinner and proclaimed, “This is a good meal!” 

Sunday, June 23, 2013

Running update:
6/16  5.0 miles in 44:30
6/21  5.0 miles in 43.53
That’s it--just 10 miles in one week.  It’s the first time I’ve missed a planned run all year...  Had also planned to write about three posts in the past week, but managed just this one.  End-of-school activities, a traveling husband, and an unusually busy office just crushed me this week.

People ask me how I manage to work and take care of the kids and train.  Most of the time I answer that the training is my therapy and that it is a labor of love for Jane.  But honestly, sometimes I am overwhelmed, and just so tired.  I wish I could have the serenity of my friend Angela Auzston, another NF mother I’ve met through the NF Endurance Team.  Her words of wisdom:  “All I can do... is the best I can.  I do every work out I possibly can and I no longer beat myself up inside if I have to miss one because I am busy being a wife or a mother.  Life happens.”   (See Angela’s blog about her daughter and training for an Ironman here:

Jane update:
I started writing my first blog with a post about our first trip to Riley Hospital in Indianapolis in January, and now we’re back here again for follow-up.  We’ve had a smooth trip so far and hoping for a good night’s sleep tonight as we have to be at the hospital for Jane’s MRI at 6:30 tomorrow morning.  I’m anxious to see if Gleevec has had any effect on Jane’s tumor, but I’m afraid I’ll be disappointed…
Once again, Jane has been looking forward to this trip for weeks.  She’s been telling people that we’ll be in Indiana for two days:  "One for the MRI and one for the pool!"  Thank goodness she finds these trips fun, and doesn’t dread them (like I do).

Consummate traveller Jane
at the start of our trip

Jane during our connection at O'Hare
(admiring the walkway between terminals)

And finally, checking in (a mobile phone-quality clip).
This is what makes doing anything with Jane so much fun--her endless enthusiasm!

Friday, June 14, 2013

Running update:
6/12  5.0 miles in 43:21 (fast today!)
6/14  9.0 miles in 1:21:47  Wasn’t scheduled for a long run until Sunday, but it was perfect day for running (sunny, dry, breezy, 60s) and I couldn’t help myself!

Jane update: 
The first words Jane uttered to me upon awakening were "I one a skunk."
(To which I am supposed to reply, "I two a skunk."  Then we alternate:   "I three a skunk",  "I four a skunk", until I finally reach "I eight a skunk" and she squeals, "What? You ate a skunk?!")
Got the good news this week that Jane’s most recent blood work was normal.  She’d had her (now monthly) check-up and blood work last week, and was so cooperative.  No tears, so patient.  When I dropped her off at school afterwards a classmate asked, "Jane, where were you?" and she tossed off, "Oh, I was having blood work."  Not something a typical six year old is used to...  Jane regularly sees a pediatrician, a neurologist, a neuro-oncologist, an ophthalmologist, and an otolaryngologist.  Also not typical!

Got an awesome little wind-up toy boat as a reward from the phlebotomist for being so good.  Jane showed it to the others in the waiting room (all elderly) who admired it appropriately. We told them if they cooperate they might get a toy reward, too :)

Sunday, June 9, 2013

Running update:
6/8  7.5 miles in 1:11:36
6/9  5.0 miles in 45:47
The curse (if there ever was one) is broken!  Forced myself to go out slow and didn’t allow myself to look at my watch, but finished both runs this weekend.
According to my training plan I am due to officially start training again June 23rd as that date marks 16 week until the Hartford Marathon.  However, Jane and I fly to Indiana for her check-up on that exact date, so I thought I’d get a bit of a head start and record a few runs now.  Here’s my brand-new running schedule!
For the time being I am using a training plan from the NYC marathon, though I had to shift some of the work-outs around to fit my schedule.   May hybridize it with a training plan from Runner’s World written by Amby Burfoot (Boston Marathon winner from 1968 who was running this year’s Boston for the 45th anniversary of his win and who was right behind me in the race!! )

Jane update:  It’s been 4-1/2 months on Gleevec and Jane seems to be tolerating it well.  She has only gotten sick to her stomach about once a month, which is much better than the once a week she was experiencing towards the end of her interferon treatment.  The last time she was sick happened to be the day of a field trip to visit her new school for the fall!  She woke up feeling fine, but started to complain that her stomach hurt while we were driving to school.  When we got to school, Jane promptly ran to the bathroom to throw up.  The downside to her infrequent sickness this time around is that when she does get sick, despite bouncing back quickly, her school is more inclined to think it’s a stomach bug than a medication side-effect, and sends her home.  It was a bummer to miss the orientation at Jeffrey Elementary School with her classmates, but Jane does know the school a bit already through her big sister and brother.  Jane had to come with me to my office briefly while I scrambled to find child care.  Here’s the makeshift bed we rigged:

NF update:  My running gear had started to take over my closet, and I finally had the opportunity to clear it out a few days ago.  I discovered that I owned no less than ten different NF Endurance Team/Children’s Tumor Foundation running shirts!  Not surprising, I suppose, since I’m about to start training for my fifth half and fifth full marathon for NFE/CTF.  Here’s the lot of them (fronts and backs):

Helen update:  Have to put in a plug for my oldest daughter—she was chosen as her fifth grade team’s student of the month!  I’m so proud.

Wednesday, June 5, 2013

After a brief hiatus, I’m back at the blog!  After the Boston Marathon I had to take a little break from being an NF Mom to be just a regular mom, wife, and physician.  But my training for the Hartford Marathon starts in a few weeks, and soon Jane and I head back to Indiana University for her first check-up since starting a clinical trial there, so I wanted to bring you all up to speed!

For more background read my training blog for the 2013 Boston Marathon (top right column).

6/5/13  Perfect day for running today:  in the mid-60s, sunny, low humidity.  7.2 miles in 1:05:03.

Running update:  Ever since I started running again after the Boston Marathon I’ve been having trouble finishing my runs.  Not all of them, mind you, but enough to give me pause.  About once a week I’ll start off strong, feeling good, only to bonk on the last half mile and have to walk home.  The strange thing is that is doesn’t matter how long my run is:  I’ve stopped at 4.5 miles on my 5 mile route; I’ve stopped at 7 miles on my 7.5 mile route.  These are routes that only a few weeks ago I wouldn’t think twice about.  I’ve tried to come up with an explanation:
·         Did I not take enough recovery time after the marathon?  (Or too much time?)
·         Is it the weight I gained after the marathon from continuing to eat as if I was still training?
·         Is it the warmer weather?
·         Is my GPS watch psyching me out?
·         Is it because I’m between marathons, and not in a formal training regimen?
·         Is it because most of my running routes end with an uphill?
·         Am I too old for marathoning?
Probably it’s for one or more of the reasons above.  But today it occurred to me:  I was about a half mile from the finish of the Boston Marathon when it was stopped.  Could this be a mental block?  I was lucky enough not to be involved in any of the bloody scene, but maybe the bombing affected me more than I realized…
Well, if so, I’ve identified it, and can now rationally move past it.  Right?

Jane update:  hearing test today at Yale.  No changes since the last check 6 months ago.  Phew.