ADD Update

I titled this an ADD update, because I'm currently composing as I watch both the USA v. Australia Women's World Cup Game as well as Game 3 of the Stanley Cup Finals (Go Hawks!).  While I actually am capable of watching both and doing other things, I can't quite muster the mental focus needed for some academic writing I need to do so I'll post instead.  There's been studies don't that show the attention we can give to multiple things at once obviously diminishes, but I feel capable.  Maybe it's growing up in a big family that always talked on top of each other :)  Also, I should shout out to Mom and her cable package for providing the opportunity to stream both (kind of sad that neither are on the network channels my antenna picks up...). 

I had planned a celebratory trip to California for after radiation was supposed to be done, so left two Fridays ago for a long weekend with the California sisters and a visiting mom and Christian Witness Sponsor (apparently in 1985 (and maybe now?) this is the name of non-Catholic godparents).  The weekend was fantastic!  The highlights below:

Saturday: California's Great American!
Who doesn't love roller coasters?!  Tons of fun on a beautiful day with the whole family (and family to be, Mr. James!).  Getting a bit more wet than expected on a couple water rides wasn't that awesome, but it was all in good fun. 

Saturday Night: Camping in the "treehouse"
The Bechtels have this awesome suspended tent in some of the redwoods in their backyard.  The nieces and I spent the night out there which was pretty fun and awesome.  The rainfly was off, so looking up at the trees and sky was fantastic.  It's still a bit chilly at night, but we managed.

Sunday: Giants game!
Most of us headed down to AT&T park to see the Giants vs. Braves on a beautiful afternoon. Man I love baseball.  One of the greatest renditions of the national anthem I've heard courtesy of the violinist of the "President's Band" from the Marine Corps.  Definitely had one of those "God, I'm thankful that I live in a place and have the kind of life that I can spend a Sunday watching a bunch of people who get paid to play a sport for a living" moments.  It was great.

Monday: Shopping!
Karyn and I were on the prowl for the perfect dresses for Sarah's upcoming nuptials.  Surprisingly, my mental state was pretty ok despite not being super happy with the post-steroid/cancer body.  Probably helps that the exercise and eating well has been making an impact.  That evening, we had a fashion show (scorecards and everything!) of our multiple purchases for the family to get opinions.  May still be deciding :)

Tuesday: Departure :(
Ugh, traveling west to east is the worst.  I left SFO at 1:00 pm and landed in Charlotte at 9:00 pm.  Thanks to a delayed departure out of Charlotte I didn't get home time after midnight.  Well worth it for such a wonderful trip!

The late arrival back home wouldn't have been so rough except that the next day I drove over to Indianapolis for an appointment re: the clinical trials I had discussed last time I had been out there.  I had contacted them after I finished radiation (as directed) as we set up the appointment.  After a bit of thinking and discussion with the doc, I decided to do it. 

The trial (official listing here) is adding on another drug to the normal hormonal regimen that I'm already on.  The drug is palbociclib, trade name Ibrance.  It got expedited FDA approval and one of the trials actually ended early because they were seeing clear benefits, so it is a promising treatment.  It's been used in women with metastatic (currently active) disease and been helpful in delaying progression so now they are interested in whether it can prevent recurrence in those of us currently in remission (still weird to say that).  This trial isn't a randomized control (that's the next one), which for me is somewhat nice because it means I'm guaranteed to get the actual drug (vs a placebo as could happen in a RCT). 

I initially had a couple of hesitations.  One, a common/expected side effect is neutropenia, or decline in neutrophils, a particular white blood cells that has a prime role in the immune response.  Selfishly (maybe?), I didn't want to volunteer to be sick/have to be on high alert for infection for the 2 years that the study lasts.  In discussing with the doc and looking at recently presented data (presented at a conference literally 2 days before my appointment...she printed out the slide for me...) despite the high prevalence of neutropenia, the infection rates were quite low.  Basically meaning that despite the effect on the cells, people aren't getting "sick", so that concern was assuaged. 

The other main hesitation was simply the inconvenience of living in Dayton and the trial being in Indy.  Its a 2 hour drive, albeit an easy one.  There is a certain amount of monitoring (blood tests, doc visits, EKGs, etc) that is involved, particularly during the first few month-long cycles.  Some things (blood draws) I can do in Dayton, but most I have to make the trip. 

Essentially it boiled down to the fact that while I am sort of anticipating a recurrence at SOME point in my life, if I didn't do anything and everything I could to help prevent/delay it, I think I'd kick myself.  As Mom and I discussed, even if (God forbid) it's sooner rather than later, in the next couple of years, if I didn't do it, I think I'd always wonder, "could I have done more?"

So, I will go back in a couple weeks for my actual trial enrollment/screening and get first set of pills.  I have to wait a bit so that I'm a certain number of weeks out from radiation before I can start. 

The day after the trip to Indy, I followed up with the plastic surgeon.  I'll see him again in 2 months after I've completely healed from radiation (though even just in a week things have gotten SO much better!).  At that time, we'll discuss what he might do to improve skin texture (transfer of fat cells...take as much as you want from other places!!), nipple reconstruction, etc. 

Logistically, I received a bill that indicated I owed $50 for each individual radiation treatment (this was only for first couple weeks...).  You can imagine I wasn't too happy...  When I checked my online insurance info it said I have $0.00 patient responsibility.  So after a couple phonecalls (thanks Mom! you're the best!) we figured out that I didn't owe anything, the doctor's office just billed before insurance payments all went through.  Well, in figuring this out, it made me more carefully examine some other charges.  Turns out I had a number of instances where insurance actually paid in full, yet I have paid copays....  A few phonecalls later and I have a few refund checks headed my way.  I'm definitely not complaining about that, but it definitely seems like a bit of a screwed up system that it happened that way (and that I as the patient had to figure it out...).  I consider myself to be reasonably intelligent and understand medical terminology, but the financial side of all of this challenges even me!  I can't imagine what so many other people go through when faced with a major medical challenge like cancer. 

Other than those updates, nothing much else is new.  Research/work continues to move along, don't go see Mad Max (it's terrible, I'm not even going to honor it with a link to the IMDB page), I joined Sarah and Karyn in doing a 100 Burpee Challenge (and started a Facebook group, let me know if you want an invite to join the craziness), I started wearing headbands fairly frequently to try to tame the beast that is the growing out hair, two of my great friends confirmed travel here to Dayton for the end of the month, I read a really good book on how we should all embrace the right side of our brain, got out on the tennis court for the first time in awhile, and tried making cauliflower pizza crust (tasted good, not the right consistency, needed to be more dry).

Apologies for not including any pictures, but....my phone got wet today (ahemmmm fell out of my dress pocket into the toilet...that's what I get for trying to look nice!) and is currently on my office desk at work in a bag of rice (which yes, I realize is not necessarily the best approach, as evident from the link Alexis sent me as well as the multiple articles that just came up when I google searched for a relevant hyperlink...whatever, it was available (courtesy of the food lab) and has worked for some).  And, since I'm watching the game (NHL only now, nice win USA women!) on the iPad, I can't send the limited pictures I took from California. 

So in closing, if anyone has a functional Verizon smartphone that's newer than 1) my cracked screen 3G LG that's too old to even quickly find it; or 2) Sarah's iPhone 4 that they are willing to part ways with, please let me know.  Based on the blue screen of death I momentarily saw (didn't know those existed for phones...) and the buzzing noises it was making when it was supposedly powered down and submerged in rice, I'm not too hopefully for it's survival and think I'm a ways away from an upgrade.