Sunday, September 13, 2015

First Descents...First Class Fun!

Since the last post on my cancerversary, a few things have happened...

School started!  It's been a little hectic and crazy, but it's been great to not worry as much about treatment, surgical plans, diagnoses, etc throughout these first few weeks.  Classes are good, students, albeit sometimes a little needy are great too, and my additional commitments I've gained in the past couple of years keep me on my toes. 

Medically, based on a blood draw, I held the study drug I was on for the last week of the cycle to allow my white blood cells to recover a bit.  However, at my follow-up visit in Indianapolis, they had, so started cycle 3 normally. 

However, most importantly, I just got back from my First Descents trip!  You may have remembered my mentioning this trip in a past blog.  They are a super cool organization that sponsors outdoor adventure trips for young adults affected by cancer.   

WARNING: This is a long post.  If you don't make it all the way through, please at least visit my FD page

The week was truly incredible.  Really, almost beyond words.  I'll give it my best shot...

Sunday: After a furious week of little sleep trying to prep for my departure, I woke up early and left for the airport to catch my 6 am flight to Albany via Detroit.  I wasn't really nervous (didn't give myself much time to think about it really) and was pretty excited (a suitcase full of only athletic wear probably helped with that as well). 

Once in Detroit, while waiting for the connection, I spotted a short haired girl with a backpack on and thought "Hmmm...wonder if she's on the trip".  Not sure how to really approach that, I didn't, boarding the flight, trying to catch up on a few more hours of sleep.  Upon arrival in Albany, I turned my phone back on and received the group text message that our pickup was on his way and we should hand out for a bit till his arrival.  Over the next hour or so, I would meet up with the other folks who were arriving (I was right about the girl I saw in Detroit...she thought the same of me, especially since I still travel with the lymphedema sleeve). We all "came out" to each other about our diagnoses relatively quickly, along with the other typical get to know you conversation starters of "Where are you from?" "What do you do?". 

We had about a 2 hour drive up to our hostel, located in the Adirondacks, near Lake Placid.
  
 
When we arrived, we met the other volunteers (more on them later) and a couple of participants that had driven in.  We settled in and awaited the arrival of the rest of the group, 13 participants in total.
 
Part of the goal of the drive up was to determine was our nicknames would be...everyone gets a nickname!  It definitely adds to the camplike atmosphere but also definitely makes it easier to remember names!  After a little bit of discussion, I settled on Slater...
 
With the initials, and the hairstyle I'm rocking right now, it seemed like a great fit.  All I was missing was the pleated pants.
 
With nickname assigned, and a delicious dinner in our bellies, we were ready to meet a couple of our guides from Alpine Endeavors who would coordinate the week for us.  We geared up with harnesses, shoes and helmets courtesy of Alpine and Jugs.  After dinner, I was surprised to see that they had decorated the house in celebration of my 30th birthday!  It was so nice!

 
 
 Monday
Our first climbing day!  The morning became sort of routine...hot breakfast and packing up lunches and gear.  The first day we went out for some top-roping  at King Phillips' Wall.

So much fun!  I had a really good day on the rock, even getting the super hero of the rock award later that night (meaning I got to sport a cape all the next day!)  I hadn't had much previous experience other than in middle school back in Colorado, but a lot of it did come back to me.  We also rappelled, swam in a gorgeous lake to cool off, and enjoyed the beautiful surroundings. 
 
 
Dinner was another great meal prepared by our chef Vegetti and her sous chef Gem.  So good.  All healthy foods too which was an added plus.  A campfire closed the night, and we were all pretty spent from the day. 
 
Tuesday
Another awesome top roping day.  There were a few more challenging routes this time, including a couple I couldn't quite get past.  It was tough to not slip into my super competitive mode of thinking and get down on myself for not climbing everything in site.  I made in my goal that night to try to stop comparing myself, and was semi-successful moving forward.
 
There was a mix of folks there...different diagnoses, different prognoses, treatments, etc.  My initial instinct was to compare myself to them (oh I had more chemo, oh wow, that's a lot of time off works, oh shit I can't believe they are still in treatment...).  Over the week though, I found it easier to just listen and get to know people and share my story without a constant 'ranking' of experiences.  And the climbing was similar.  Even on the same pitch and the same route, we all took different approaches, made different moves.  Even just shorter vs longer legs changes the experience of the climb.  I attempted to make a conscious effort to really stay present and focused on  the positive experience at hand.
 
Wednesday
This was our "active rest" day where we hiked rather than climbed.  It was a nice chance to rest the arms and stretch the legs. 
Arms up, mouth open...international sign of fun!
 
The Adirondacks are gorgeous and I was happily surprised to see that some of the trees were already turning fall colors.
 
In the afternoon, we checked out Lake Placid, seeing the older ice rink from the 30's (avoided the $7 charge to see the 1980 Miracle on Ice rink).  A downpour spread the group out pretty quickly and I enjoyed walking alone for a bit.  Eventually I ran into some other ladies and enjoyed some adult beverages. 
 
Thursday
Instead of just top roping, Thursday was our first day of multi-pitch climbing  A guide goes up first and sets various gear to then climb into.  Once at the top of the 'pitch', he anchors into the rock then belays from the top as the other climbers go up.  The last climber then 'cleans', removing the gear.  For this, we broke into teams.  We somewhat quickly came up with the name "Shit Swappers" for our group...well, because we were giving and taking a lot of shit to each other the whole day.  The climbers were myself, Mo' and Star, along with our guide Handles who had joined in for these days.
 
After a 3 pitch climb in the morning and rappel down, we then finished the afternoon with some more top rope climbs.   
 
After climbing, we spent some reflective time at the river nearby and I can happily say that when thinking about the negative things and baggage in my life, it seemed difficult given the surroundings. 
 
Dinner Thursday night was like a party, with a few guests and the whole guide crew joining in.  We played washers, had some sing-a-longs, great campfire conversation giving each other props for the day, and enjoyed another delicious meal. 
 
Friday
This was the big day we had been working towards.  A serious multi pitch climb day.  We ended up doing a 6 pitch climb that got up about 800 feet from the deck.  It was freaking amazing. 
 
There were a number of fun things that only those with climbing experience would probably enjoy hearing so I'll save you the explanations.  Just know that it was always interesting, fun, and challenging. 
 

View from mid-climb

The challenging chimney and site of an exciting fall

Team Shit Swappers and our conquered mountain behind us.
 
After climbing, we regrouped for a Baci ceremony at the lake, tying strings around each others' wrists for good luck. 
 A moment that will last longer that the scrapes and bruises!
 
Since it was our chef's birthday that day, we had pizzas delivered to give her the day off, had another awesome campfire, and watched a great slideshow that the photographer put together (how smart are they to have someone designated with this duty! I probably should have waited for those photos, but I was too impatient...). 
 
Saturday
Departure day... It was sad and hard to say goodbye to the great friends that we had all met.  WE obviously exchanged contact info and have a Facebook group to keep in touch.  I think I will with many if not all of the participants and hope to see many of them in the future.  They are truly awesome individuals.
 
Once at the airport, I had a delay in a flight (woke up from a nap still on the tarmac!) but was able to reschedule onto a flight through Newark and made it back to Dayton around 9.
 
I've spent all day today facing the harsh reality of being back in the 'real world', checking the emails I pretty successfully avoided while there, realizing how little food I have in my fridge and washing the smells of sweat, lake water, and campfire out of my clothes.  
 
In thinking about and reflecting on the trip (something that will continue, I have no doubt), I'm struck by some of the greatest things about the week...
 
THE PEOPLE
Without a doubt, the people that were there were one of a kind.  The participants were this diverse group of people that all brought something amazing to the table.  I can't help but acknowledge them (in no particular order):
Mav- The girl from the airport who turned out to be an even bigger badass than I thought when I saw her. 
Bones- One of the most caring people I've met.  Always helping those around him and the best puzzle 'piece checker' we could have asked for. 
Bumpz- Talented.  Quiet and hilarious.  My backseat buddy.  Hoping to see her soon in San Fran.
Flash- My bosom buddy.  Such a similar story to my own. Fun, reflective, and thoughtful, a great mix.
RemeD- This chick faced her fears and really was Out Living It.  Her courage was admirable.
Pinky- A guy who till the very end and airport goodbyes was positive, despite literally feeling his tumor multiple times on the trip.  One of those who continues to fight.
Superman- The other one still fighting so hard.  A straight shooter that just won't back down.  Inspiring.
Mo'- My Minnesotan connection and other loudmouth on multipitch days.  Gives and takes shit with the best of them.
Star- The reserved one in the group of loudmouths.  Had such a long battle and seems to be on the other side of it back to kicking ass.
Knope- A take charge lady (like her namesake) that is one of the proudest survivors I've met.
Brain- Another seriously good guy that was always helping someone.  His excitement about his grad works make the scientist in me smile.
Boots- Hoping to see this guy in Boston sometime, the trip DJ/speaker provider, another super caring dude that had terrific energy.
 
The staff were fantastic.  Pedro is legitimately one of the peppiest people I've met and I won't soon forget his advice to "find your inner smalls".  Pop Top kept us all on track and smiling, and I have enough of her selfies on my camera that I don't think I could forget her either.  Superfly, staff in Denver, and photog on the trip is a badass climber and has such passion for FD and their purpose.  Vegetti's food was amazing as she is.  It was awesome to celebrate her birthday.  Gem, the sous chef, put up some late night kitchen takeovers and was one of the few who supported my puzzle piece organizational system!
 
The volunteers were top notch.  Each camp has 2 camp mom and/or dads.  Our for the trip were Ama D, a great camp mom (and real one!) and a pretty kick ass climber too.  If I'm ever skiing near her, I'm checking out her shop.  Wildflower, our other mom, helped everything run smooth and I'm looking forward to hopefully seeing her in CA soon too.  Our medic, Crack, a chiropractor, provided more free adjustments than he needed to, rocked the banjo, and added to the fun of every day of climbing. 
 
Our guides were world class, in their guiding and just as people.  Alpine, Jugs, Yo Mama, Grinz, Handles, and Mr. Miagi.  What stand up guys.  I always felt safe, they were willing to teach, be patient, play hacky sack, participate, and help us have such an amazing time. 
 
The caretakers of the Hostel became honorary camp members and M&Ms and Pootz were great members of the group.
 
THE PLACE
The Adirondacks were beautiful...and I've been lucky enough to see a number of beautiful places.  I'd recommend anyone checking it out. We were able to climb great rock close to where we were, and the 'swimming holes' were terrific.  The lack of cell service helped to disconnect and everywhere you looked, there was something beautiful to see.
 
THE PROGRAM
There wasn't forced therapy on this trip.  There didn't need to be.  We all opened up to each other and talked about the things we needed to talk about.  I absolutely loved the balance of organized activities and free time when we were just hanging out.  These guys have been doing this for awhile (Since 2001) and I think have settled in on a really great formula.  While I wish it was longer, it was also probably the perfect length too.
 
Cancer or not, this was a great time.  And because of the cancer, it was even better.  I've drank the juice and am a proud FD family member now.  I've already submitted my application to volunteer at future trips.  The model they follow for continued participation is really smart in my mind.  In order to go on future trips (FDX) alumni have to reach fundraising minimums. It's these funds that pay for the ridiculously awesome adventure I just got to experience. 
 
In the future, I'll likely do some event based fundraising, but for now, I couldn't help but ride the excitement I have and start my page.  Throughout my dealing with cancer, so many people have offered help and asked what they can do.  I think now I have a good answer.  Donate to the page, support this cause.  It supports me and other like me, in a way that I think is unique and exceptional.  Visit the FD homepage and see how else you can help, including simply passing on information about this awesome organization and what they are doing.  I'll happily answer any questions you may have. 
 
To pass on the FD love, please visit:
 
 
 
 

Saturday, August 15, 2015

Cancerversary

Happy Cancerversary to me!

What is a cancerversary you ask?  Well, it's my self-declared term for my year past diagnosis mark.  However, as discussed with Mom this morning, I always struggle a little with when my diagnosis was.  Was it when the ultrasound with the BIRADS 6 was reported?  Was it when the biopsy was done? Reported? When we followed-up?  So like most things cancer-related, I'm just deciding and moving forward. 

So, today, August 15th is the "official" day.  It's the day the biopsy results were reported.  And, as it happens, I'm working at the running store again. 

Here's where I was a year ago when I got The Call.  Hair's a little shorter now, I drove myself since Mom's not here, and that was an afternoon not a Saturday morning.  Sidenote: I got my second post-hair growth hair cut yesterday.  Had to tame the fro a bit.  Not really looking forward to actually having to get haircuts every 5-6 weeks like you're supposed to with short hair, but it's probably worth it at this time. 

So I'm a year out.  Getting ready (used loosely because I'm a master procrastinator) to start another school year without having to worry about how I was going to manage cancer+life.  I guess I'll break it down categorically to assess where I'm at...

Health
Doing well!  I had a follow up appointment in Indiana last week for the clinical trial oral medication I'm on.  I continue to do well, though my white counts are getting a little low (expected side effect) so we may have to hold off the drug at the end of this month.  So that drug combined with my hormonal regimen (daily oral meds, monthly shot) will continue on, hopefully preventing any recurrences.

I saw the plastic surgeon this week as well.  Last time I was in was right after radiation ended and I was a burned up mess, so I needed some time to heal.  We scheduled a procedure for the week of Thanksgiving so he can go in and 'clean up' the capsule, lower the implant, and try to make things more symmetrical.  Should be a fairly easy procedure (anesthesia but outpatient at his office) but the break from school will provide and opportunity to recover.

Having the procedure in November will also allow me to finish the half marathon in October that I'm "training" (again, used loosely) for.  As a sign of how I'm improving, I'm able to be active again and have been relatively successful in slowly progressing back towards my pre-cancer weight.  I'm looking forward to the routine and schedule of the school year to help with 'staying on the wagon'. 

The side effects of treatment are pretty minimal, just the annoyance of hot flashes and possibly a bit of fatigue (so hard to diagnose...how do you distinguish between fatigue and just being tired from life?!). 

Work
The summer was good, though potentially not quite as productive as I would have liked.  My students did well.  It's always fun to see them learn and I really enjoy being a mentor.

While I'm definitely looking forward to not having to balance working with the cancer stuff, it also allows me to put pressure on myself.  If I was able to manage to do well, be involved, teach, etc, during that time, now I really have to step it up!! :)  I keep reminding myself of the balance that was forced upon me last year, and realizing that I don't have to spend 24-7 thinking/working about work.  We'll see how that goes...  I really did sort of just "bulldoze" (to quote my shrink) through it.  I'm looking forward to a more "normal" year, and try to remind myself that it is still just my third year and I'm not expected to know everything, be everything, do everything, for everyone.  (I should probably bookmark this post for future reference...).
 
As part of the 'work' category I should mention that while I enjoy my time at Runners Plus, I'm also balancing that with having fun and enjoying life.  I probably was a little psychotic to work two jobs during most of my treatments last year.  So I'll take some weekends off for fun things, travel, etc.
 
"Life" (i.e. the rest of it)
Life remains always interesting!  I've enjoyed being in my house this summer, taking care of a few chores...
Boxspring surgery was easier than anticipated, and left room for a nicely cleaned garage (hooray shopvacs!)
 
and having friends over for casual conversation, drinks, and yard games...exactly what summers are for! 
 
I found myself in a hospital again last week helping Grandma 'Tucci recover from a kidney stone/infection...
Granddaughter of the year?!
happy to report she's back at home, getting stronger, and always her stubborn self!

The rest of life is back to a seemingly normal existence.  While driving to Chicago (again used loosely since sitting on a country road for the 50 mile detour of I-65 being closed shouldn't be considered 'driving') I listened to a terrific audiobook:
Aziz's Ansari's Modern Romance, which Amazon says "..Ansari combines his irreverent humor with cutting-edge social science to give us an unforgettable tour of our new romantic world".  It's true, it's funny and yet based on actual research, and a combination of hope and despair.  Basically, being single, while great in many ways (like the Saturday I mowed my lawn, shopvac'd my garage, who needs a man?!) including total control of TV binge-watching, can still sort of suck at times.  And the possibility and options of ending the singledom are not always that amazing.  Cancer was sort of a nice excuse to "not be dating right now", as if dating is something that you just turn on in your life whenever you want.  And now, at this 'year out' point, I guess maybe I'm "ready" again.  Which probably just means my head is less full of thoughts on appointments, copayments, and surgical options and able to wander to things like finding a person to 'do life' with.  Remind me to probably NOT link to this blog in a future online dating profile I'll inevitably create.

I've got the fun trips coming up like the First Descents climbing trip in NY in just a few short weeks!  Adult summer camp in Michigan not long after.  I'm going to do a short little talk at a UD sorority's philanthropy event to raise money for and awareness of breast cancer.  Sarah's wedding celebration in California in October.  So much fun this fall!  And I think a healthy balance (my mom's FAVORITE word) of cancer and non-cancer related activities. 

So I guess there are a few things left reporting on, probably in this once a month type timeframe.  We'll see how the next few months of "last year at this time...." goes, might make me want to share a bit more.  At this point, as I was forced into last year at this time, I need to just go with the flow!

Thursday, July 23, 2015

Long time no blog...

It's been awhile, I know.  As I mentioned to a friend via a nice text catchup the other day, I've been too busy living!  The rundown of the happenings since my last post when I had just returned from California...

I continue to work with students doing research at UD and working at the running store.  Things research-wise move slowly when having to order and set things up but I think for the most part all are having a good experience and slowly but surely, progress is being made. 

The running store continues to be a nice break and a bit of extra cash.  Working guilted me into signing up for a half marathon.  Ugh.  When I finished Insanity, I knew I needed something to motivate the working out/losing weight plan, and a race will do that.  I have low expectations, no real time goals.  I'm not sure I'll even run the whole thing.  I have to remind myself that it'll be a year after my 2nd-ish chemo treatment so yeah, finishing is probably 'good enough'  (shoutout to my sister who thought this would make a good theme song for her circus arts rope performance...  (how cool is that by the way!) it may become my new theme song.  It also comes from a great movie that like me turns 30 this year). 

In other physical pursuits, I started doing a 100 Burpee Challenge.  1 on Day 1, 2 on Day 2 etc, up to 100, the catch being if you skip a day, you make it up.  I got through Day 35 and then while with Karyn in Montana (more on that in a min) we did 100 one day (she had like 240 to make up...) and so I might quit.  Anyone who feels like guilting me into keeping my word (I made a Facebook group and everything!) feel free :).

Health wise, June wasn't super exciting, which at this point it good.  The peeling/burning from radiation slowly began to heal.  Another monthly shot to shut the ovaries down.  I visited Indiana hoping to start the clinical trial, only to find out my bilirubin was slightly elevated and I'd have to retest before I could pick my drug up.  It came down a little (and was taken by a different lab with different limit...got to love that) so I was able to return, pick up my drug, drive through a monsoon back and start it.  It's been going well (as a reminder, it simply adds on top of my 'normal' medication to hopefully help prevent/delay recurrences).  I got blood work drawn yesterday (do at the midpoint and end of monthly cycles) and while my white cell counts are slightly low, I can continue to take it.  I just need to be aware of any signs of infection, wash hands, not share drinks, etc....the normal things that people who think about germs do. 

I see my surgeon in a few weeks so she ordered a mammogram of the remaining (right) breast, which came back clean.  I was surprisingly not anxious at all for this test...perhaps because I know that the chance of reoccurrence is actually greater NOT in the remaining breast tissue but in a metastasized spot elsewhere in the body (if some pesky cancer cells managed to survive and thrive despite the chemo, radiation, hormone therapy). 

The radiation oncologist signed off on my skin healing at my follow-up so I go to knock one provider off the list!  A few more to go...  I followup with plastics in the coming weeks as well where I'll discuss some possible additional work to help with some asymmetry and other aesthetic outcomes (see how professional I can talk about boobs!). 

July brought about visitors and vacation!  Two of my best friends visited for the fourth...

We saw Kentucky, survived rain at a Reds/Twins game with great seats and jumbo tron time...
 
We rocked our USA gear for Runners Plus's Brooks Party...
 
We had an awesome adult day at the great amusement park King's Island...
 
Enjoyed camping and hiking in the beauty of Hocking Hills...
 
And cooked out for the fourth, took naps, and had a bonfire.
 
All in all, we hit most of the things I had on the pre-trip Google doc itinerary I made (yes, I'm a dork).  So if anyone is thinking of visiting (hint, hint), you can be guaranteed to be shown a good time!  As you can see by the genuine smiles of happiness, it was a really great few days.
 
I didn't have too much time to settle back into the normal routine before I was headed for the much-anticipated nuptials of my sister Sarah!  I'm so happy to say that it was a most wonderful ceremony for these two...
Mr. and Mrs. James LeFort!
 
The location (Glacier National Park) was perfect! 
The rental house has grand view from the front porch...
 
Pre-ceremony, we spent some time having fun rafting...
 
and walking through the woods...
 
Sarah and James found the most beautiful ceremony spot on Lake McDonald...
 
 
and wrote a great ceremony that everyone enjoyed.
 
Sarah looked gorgeous and was so happy...
 
and James was a stud, looking good and managing photography!
 
though we had to convince him at times that it was good to see people's faces and not just the beautiful setting!
 
 
  'Tucci made the trip and even had to deal with a a cancelled flight on the way home!
 
And this lovely lady with me was definitely a proud mama!
 
 
After enjoying Going to the Sun Road (thankfully in advance of the current wildfire), most unfortunately had to return home. 
 
More unfortunately, Mom was hit with a severe case of vertigo (her first ever) that detoured some of us to the Kalispell ER, leaving the men to pack up the house and get Grandma to what would be her cancelled flight (got out the next day).  Some powerful drugs provided some relief, we settled into a hotel for a couple of nights (think the girls didn't mind swimming in the pool and the proximity to Coldstone!) while she recovered and then got her back home to Phoenix.  Happy to say she's feeling like herself again. 
 
The Bechtels were nice enough to let me crash their camper van trip through Glacier and back to California.  Despite it being cut short, it was still a great time!  Despite rainy/windy conditions, a few of us managed a short hike to a beautiful waterfall in the park...
 
and visited Crater Lake on the drive home. 
 
So blue! Such wonderful time with family!
 
I got to knock Oregon off the list of states to see, driving through most of it.  I hadn't been through the northern part of the "Republic of California" as my brother-in-law calls it (they do check you for produce upon entering...so much for free travel between states!) either.  The volcanic mountains are so different than the Rocky Mountain range of Colorado that I'm used to!  Mt. Shasta is quite the sight, arising from seemingly nowhere, and with so much snow despite the drought and time of year. 
 
It was tough coming back home and the time in nature (and good nearby find with the girls) made me anxious to explore my surroundings here for that same kind of serenity.  I may have already added to my camping equipment supply (thanks to coworker Jen for the SteepandCheap suggestion that facilitated this...) to help with this.
 
While gone, I really tried hard to disconnect from technology and was really quite successful (had to text/call a bit with Mom's issues).  I could do it since others had their phones for things like directions, and did have to basically let mine die and not charge it to help resist the urge (I'm encouraging Adam to suggest to the folks at Apple a 'vacation mode' than essentially turns a smart phone into an old school flip phone with time/call/camera so you're not tempted by apps) to check in on social media and with the world. 
 
I'll have another opportunity to go device-free in September at an "adult summer camp" I sign up for.  The invitation to go from a professional colleague intrigued me, and if there's anything I've learned from all this (i.e. cancer) it's to take advantage of opportunities for fun! Because really, why not?
 
Summer is all too quickly coming to and end, but I'm hoping to continue making the most of this time to refresh and recharge.  I'll begin to prep for classes and the upcoming semester soon (still probably after I really should...) and have lots of letters of recommendation to write (the downside to trying to really get to know kids). 
 
I'm approaching the time where I'll start to be doing the whole "a year ago I was....".  It still sort of bewilders me.  Last year at this time I was still a week or so away from the first diagnostic tests that started all of this craziness, though was probably beginning to Google search and wonder "hmmm...what could this actually be?".  It's much more fun to search the internet for places to camp, birthday presents for the family, and flights for a California wedding celebration.  Lesson learned alert: be grateful in the little things Anne.
 
On a more somber note, despite my continued recovery and good tolerance of treatment, more and more people have to deal with cancer and other health maladies.  Support does matter, as you have all shown me in such wonderful ways over this past year.  Continue to send good thoughts, someone out there always needs them, and I have a few people in mind right now that I'm happy to deflect them to.
 
Look for an update post all these follow-ups in the coming weeks.  Don't take a lack of posts as a sign anything is wrong, but more likely, things are good!  Always feel free to reach out by email, text, or phone.  Enjoy the day!
 
 
 
 
 
 
 
 
 
 

 

Monday, June 8, 2015

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. 

Friday, May 22, 2015

Done?

Done.  Done?  It's something I've said and asked the past two days.  Rewind to Thursday morning...

I had a regularly scheduled follow-up with the oncologist.  As he said "other than it looking like someone poured acid down your chest, you're doing great".  Um, thanks?

The medical assistant was completing my medical release for the First Descent trip in September which was nice to see.  Also nice to see this response:

Patient in Remission?  Yes.

So that's cool.  After that appointment, I got my third anti-hormone shot (ooo...exciting...other butt cheek!).  After, I went to the fancy grocery store with the delicious bakery (mmm...killer brownies...) to pick up some treats to give the radiation techs later.  Figured I could get way more for the money than with an pre-bought fruit basket.  After, it was to campus for some fac/staff wellness yoga (I'll have to post on that later...it's a different sort of practice than I've ever really done...).  Home for lunch then off for my last radiation treatment

 I couldn't help but smile a little when they called me back.  The techs were really appreciative of my  thank you (the one even said she texted her husband...apparently she's a big fan of the cookies I included).  It's an interesting relationship that I built with these people.  I pretty much had three, two girls and a guy, one girl a little more than the other.  The whole process is pretty quick and we fell into a fairly regular routine.  Normal pleasantries were exchanged when I'd arrive.  Then, as I'd lay there and they would align me (mind you I'm half exposed at this point), we'd tend to chit chat a little bit.  I'd find out random things (ex, the guy has kids, lives in Cincinnati, turned on his A/C when it was hot, is from Wisconsin and once worked selling shoes at Macy's), sometimes talk about whether I had biked or not, what was going on at school etc.  Thing is, their job is to go pretty quickly, so these conversations only lasted a few minutes.  But there were thirty-three few minute conversations.  So...yeah, I grew pretty comfortable and familiar with these folks.  Still, when they gave hugs afterwards, it's still a little awkward to be in a hospital gown hugging the people that have seen you half naked for the past 6+ weeks.  They gave me this hilarious (in my mind) certificate:


 
As I was leaving, it was nice to know that I wouldn't be routinely returning at least for some time.  Monthly shots, sure.  Follow-ups, yes.  But real, steady treatment, hopefully not.
 
Semi-emotional interlude.  I'm happy to be done.  It's been a long and interesting 9 months.  Probably the most body-changing, life-impacting 9 months I'll have (especially considering I very well may never be able to conceive a child and go through a pregnancy).  So, yes, being done feels "good".  But it can also be a little scary.  The thought of "when will it come back?" is pretty near the front of my mind.  And yes, I realize that statement could be an "if" rather than a "when", but I feel like some preparation for what might happy is warranted.  Like the surgeon said, she hopes I don't go off and get a pink ribbon tattoo because when people do, and find themselves back in the office a few years later, that permanent reminder of that last time only annoys.  So while I'm happy, and I've celebrated (more on that in a bit), I'm not going too crazy.  And, because the radiation went so well, and didn't seem that hard, it sort of feels like a modest celebration is all that is warranted. 
 
So it was 2:30 and I was done.  I felt like treating myself, which for me usually means food (no wonder I have weight issues!), but I didn't have my wallet with me so headed home.  I decided to walk to the nearby bakery where I got a "worth it" cupcake and pretty decent cookie:
 
Buckeye style...mmmmmm...peanut butter.  And that was pretty much it.  I spent the rest of the afternoon/evening basically lounging and thinking about it all. 
 
Today, I worked with students all morning and then enjoyed lunch (courtesy of my generous colleague in celebration) at the Mexican restaurant years-in-development near campus with the work friends.  After, my overly generous mom had sent my a spa gift certificate so I decided to have a much more enjoyable 2 o'clock appointment and get a pedicure. 
 
That's a little bit of color WU crew!  I think it was called "Clay" :)  The spa is super posh and fancy, not my total comfort zone, but enjoyable none the less!  I go back tomorrow for my massage.  There are some special concerns/considerations with massage now given  the lymph node removal and recent radiation treatment.  Mostly, he can't work the tender areas and can't use hard pressure on the side with node removal.  Shouldn't be a problem as I'm really looking forward to some leg/hip/low back work.  Getting back into the swing of working out comes with a few aches and pains!

After the fancy treatment, I shopped a little, which didn't do much to lift my spirits (clothes being expensive, not fitting well, etc.).  May just have to keep rocking the workout pants and a couple pairs of jeans that fit this summer!  While I was letting my toes dry, I decided to use the rest of the movie gift card my mom had given me (she spoils me...she knows it, I know it, we're ok with it) to buy a ticket to see Tomorrowland.  Looks like reviews are a little mixed, but I enjoyed it.  Feels a little bit maybe like the young adult version of Wall-E in some ways.  I won't spoil it for people, but there's a bit of a "lesson" in it, and one that hit me pretty hard.  And if Disney wants to try to use it's power and influence for good, I'm ok with that.

If we're Facebook friend you may have seen I shared a couple TED talks by Brene Brown, a researcher on shame and vulnerability.  I read her book Daring Greatly a couple days ago (literally in a night + a little bit...so much time when you don't get sucked into binge Netflixing!).  Yes, it's self-help, and I know that's not everyone's thing, but I really enjoyed it and liked a lot of what she had to say.  It made me think a lot also about the whole "journey" of the past nine months.  I've probably been more vulnerable on this blog than I even realize.  And, I think that has helped me fight, or enter the arena as she might say.  I also think in general, the cancer has forced vulnerability upon me.  It took away any invincibility I thought I might have had (and I didn't think I had that much to start).  And with that came courage and strength. 

Another concept in the book, talks, and other self-help/psychology type readings (yes, I've read a few, and discussed them with therapists I've seen, and yes that is plural) is the idea of gratitude.  A lot can be said for the simple act of recognizing that which you are grateful for.  As my one shrink said, even if it's something as small and seemingly insignificant as being thankful that someone painted the yellow stripes down the middle of the road so that cars don't run into each other, we can always find something to be grateful for. To list my gratitudes here would take up far too many lines, but I'll simply put this as another "Lesson Learned".

Be more grateful.
This is an emotion you can't get enough of.  It's the best kind of uncomfortable to have an overwhelming sense of gratitude.  It's happened many times towards great people, opportunities, and moments that this cancer brought upon you.

So I'm done.  I don't think I'll be done with this blog.  There's still things to come...last reconstruction, clinical trials, follow-ups, etc. So you're not done with me just yet :)

As I was waiting to be seen on Thursday, I overheard (thin walls!) the exam room next to mine.  Combined with listening to the NP and docs dictations, I could piece the story together pretty well.  Diagnosed in 2009 (if I'm remembering right) with stage III breast cancer (like mine), at her yearly check-in. All's well.  There was real joy in the voices of her, her husband, and the doc to see one another and have nothing much to talk about other than what was new in life.  That's one appointment I will look forward to. 




Tuesday, May 19, 2015

A Welcomed Cancellation

Saw the radiation doc for the routine weekly skin check yesterday at treatment.  As I mentioned, I started to peel from the burns and it's got increasingly worse.  If I was tech savvy enough to do the Buzzfeed-style "Warning: Graphic Image.  Click to reveal" black boxes, I would.  Instead, just take my word for it. 

Because of the skin damage that I have and that it is also occurring around my lateral scar, the radiation doc has decided to cancel the five scheduled "scar boost" treatments. Apparently, a lot of people don't do them (particularly if there's been reconstruction) and nothing in my pathology suggests it is necessary.  So...
my last radiation treatment is Thursday!
 
It was surprising, but great news.  I checked into leaving earlier for California (since I had originally scheduled my Friday post-treatment departure) but on short notice those flights are considerably more.  Plus, it will probably be good to not miss additional days, so I can be around for my summer students (first meeting with them yesterday went well, but multiple projects is a lot to keep track of!). 
 
Thursday is also my 3rd anti-hormone shot as well as an appointment with my oncologist, so will be a big day.  It'll definitely be a change to go to such infrequent appointments!  I need to contact the Indiana doc about getting in the clinical trial, and there's still plastics and some reconstruction (ahem...nipple) left, but this is the last big step!
 
Not bad news for a Monday.

Wednesday, May 13, 2015

Start of Summer!

Pardon the lack of posts...I know that some of you rely on it to stay in touch. Just realize that no news is good news in this case!  I'm feeling much more like myself, back to my 'normal' life, and who wants to hear about that?!  As much as I have joked that people would love a movie of my life, I don't think it's all that interesting!

After classes finished (my last post), finals happened (more stressful for the students than me), I hunkered down and did some grading, attending graduation where "President Bartlett" accepted an honorary degree...
Haha, I'm the one taking the picture in the middle left.
 
It was different than last year as I knew the majority of students graduating from our programs.  We line up and give hugs, and I said goodbye to a lot of really great kids.  The next day I finally finished uploading grades and I was done done. 
 
What a year.  It seems like so long, yet in some ways it flew by.  I know I don't give myself enough credit for not just surviving, but continuing to thrive (as my colleagues, friends, family, etc remind me) this year.  Remember those Lessons to Remember from a past post?  Here's another one...
 
Anne, you're capable of giving yourself credit.
You did it on this blog.  For "everyone".  Do it more often. You deserve it.
 
But enough of the mushy stuff...
 
The summer brings about a time of renewal for academics and it's an important one.  I've allowed myself to take it pretty easy this first week.  It'll be a busy summer of research and advising students, but I checked out a little bit the past few days which was needed.  It probably helped it felt like summer as it was nearly 90 here!
 
Speaking of heat, how's radiation?  Well, it continues to go pretty well.  I started to have the skin irritations I was warned of, including peeling skin (I'll save you the grisly photos on here, but if you want to see, just let me know...).  It has led to a new use for pantyliners though..

Got to prevent any rubbing...
 
My preferred mode of transportation to and from treatment has been my trusty (and pretty!) commuter bike:
 
With very useful pannier and basket.
 
It feels pretty good to walk in to that place, helmet in hand, glistening a little (or a lot) from some sweat.  Brings a sense of control back.  It's about a 3 mile ride from campus, with a little hill to push me a bit.  The way from there to my house has a couple bigger hills...while pretty, my bike isn't necessarily made for climbing, but it gives me a good quad burn!
 
If only a were running...and at that pace...
 
"Speaking" of running, I ran today!  And a little last Friday!  I did the 4 mile run/walk last Friday that Runners Plus sponsored, a good (but hot!) time with my friend Maura.  This morning, I met up with my colleague Diana in Yellow Springs to jog/walk on the bike path there.  Wasn't jogging fast, didn't jog the whole 5 miles, but I did jog a bit.  Considering it's been about 9 months since I was jogging routinely, I'd say the baby steps are moving in the right direction. 
Tuesday night, I was very "urban" and went to free group yoga downtown at the Riverscape PavillionGo w/ the Flow Yoga was teaching to 300 people!  It was pretty fun.
 
I'm on the middle left again, this time not taking a picture.
 
So as you might guess from my activity levels, other than the peeling skin, I'm not having any ill effects of the radiation (i.e. fatigue).  Hormone therapy is alright as well, though the hot flashes have returned.  Those combined with heat and my stubbornness to refuse to turn on my A/C in May leads to pretty sweaty nights.  Considering these treatments will last years, perhaps I should invest in these, or these.  

 
One of the side effects I'm working my way out of is that whole hair loss thing from chemo.  It continues to grow and I'm in a pretty awkward fro stage right now....
 
Post workout...always the worst time.
 
Fortunately, "product" comes in handy and helps tame the beast.  I've sort of moved out of the spiky look and into a combed 'do...thinking that could be an easier transition to a longer hairstyle.
 
Back is still a curly mess...
 
 
Other than the awkwardness of growing hair out, things are good.  Had friends over for Cinco de Mayo (if you've never made slow cooker carnitas, you need to...so good, so easy), played some croquet, had some good times.  I'm looking forward to being in this great house for a full summer.  I've already taken advantage of some good deck time while doing work, watching Netflix, etc. 
 
"Speaking" of Netflix, I'm nearing the end of my recent binge...Gilmore Girls.  I pretty much want to marry Luke Danes
 
Can't you see it?!

 
I watch too much TV. I know this.  After I'm done with GG I'm taking a break from screentime and going to get some reading in.  I usually avoid reading because a lot of times it'll keep me up at night, but it's the summer!  Less of a structured schedule allows for some flexibility, including catching up on sleep if necessary :)
 
Think that's about it for the update.  I booked a flight out to California at the end of May to visit (mom will be there too!), do some shopping for Sarah's wedding (two months from today!), and celebrate being done with radiation!  Looking forward to that!