post chemo fun.

Hi family and friends,

I have officially been free from chemo (& cancer) for 6 weeks and I'm very grateful to have that behind me.  I had a 5 week follow-up with my oncologist last Thursday and she assured me that my PET scan (to monitor for cancerous activity) is still clear and my ECHO (to evaluate heart function) is good too.  I have been cleared to have my chest port removed (scheduled for Monday Oct 1st!) and my next scan and appointment is 3 long months away.

In other news, before I went back to work in mid-September I was able to take a refreshing road trip with a good buddy to visit another good buddy in Mt. Pleasant, Michigan.  We drove 15 leisurely hours across Pennsylvania, Ohio, and Michigan to see her home town and then experience beautiful Lake Michigan.

Beautiful Sleepy Bear Dunes... quick to run down (30 seconds) but torture to climb back up (45 minutes)!

Me, Kristin, & Kristen

Erik and I have also made time to see The Boss... twice... in the last month or so.  First at Citizens Bank Park in Philadelphia and next at the Meadowlands in north Jersey.  Erik took the picture below right after he touched the guitar!

Last exciting news for this blog is that my sister Ally came to visit a few weeks ago too.  We had a great time celebrating the 225th birthday of the signing of the US Constitution (also Ally's bday), hiking in Fairmount Park, seeing Finding Nemo 3D, and browsing the Free Public Library.  Also with some good eats mixed in there.

Ally and me early in the morning.  Proof that my hair is growing... slowly but surely.

Carvings dated back to the early 80s... one tough tree.

For now I'm just working and settling into a "normal" life.  Erik and I are looking forward to some uneventful next few months.  Thank you for all your support and prayers over this last baseball season.

Love,
Katy Jo

12th AND FINAL inning. :)

Pure joy.

We are one day out from the 12th and final chemo treatment and I feel so good.  Usually this day is met with nausea and blahness, but with God's grace I feel great.  As we finished this last treatment our nurses presented me with a Certificate of Accomplishment and a very special bell ringing.  

Goofy grin for the bell ringing.

Action shot

Great great nurses

Up next:
PET scan Aug 27 for more follow-up
ECHO Sept 5 to complete the cardiac study I've been apart of throughout these treatments
Oncology appointment with Dr. Nasta Sept 20 (then once every 3 months)... and as long as my labs and tests are ok I can schedule to have my port removed.  :)

As far as celebrations go we will continue to take fun little weekend trips and welcome visits from friends anytime... then our big celebration will be our honeymoon next April in Croatia!

Thank you for more support than I could have ever asked for.  It's been quite an adventure and we couldn't have done it alone.

I've posted this video before... but I can't get over how true the words are so here it is again.

"Beautiful Things"
Gungor

All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

All around
Hope is springing up from this old ground
Out of chaos life is being found in You

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make me new, You are making me new
You make me new, You are making me new

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

Love,

katy

10th and 11th innings.

Hi friends,

This much appreciated leave of absence from work may be making me somewhat lazy... as you can tell by this combo inning post plus apartment pictures.  Everything has been going pretty well here.  Lots of good rest complimented with weekends away and great visitors.  In the last month Erik and I have welcomed 4 out-of-towners (including my mom) and traveled to Fire Island, Boston, and Ithaca to visit friends and family.  We have also had 2 successful innings with pretty tolerable side effects.  Right now I'm looking forward to another month of rest and marking the end of this season with inning 12 on August 16th.  I am so grateful to feel well and know that I am well.  I'm anticipating a few more tests following this last treatment:  a PET scan, ECHO, and pulmonary function testing to ensure everything is still ok, then the appointments and tests will space out and life may feel a little more normal.  Below are some pictures of our new apartment in West Philly.

Welcome to our new apartment.

View from near the front door of our "dining room" table and kitchen

Kitchen close up

Living room

Our funky stairs... soon to have a one of a kind Philly mural

Our upstairs bedroom

Beautiful exposed brick wall opposite our bed

The stairs begin right under the hanging bike

Loft living room

Phillies corner at the top of the staircase

1 more "inning" to go!

Thank you all for the incredible support you've shown us throughout this hopefully once in a lifetime baseball season.

Love, 

Katy

Extra note from my mom:

I have been thinking of the two most beautiful words in the English language.  They are: REMISSION and GRATITUDE.  I go over these words in my mind every day all day.                

Love,

Mom

9th inning.

Life according to Erik:

Baseball is the greatest game on Earth. The most significant, defining reason for its greatness is the one thing that makes baseball so unique.

There is no clock.

Baseball is a game whose cadence is set not by seconds and minutes, but by outs and innings. Three outs each side makes an inning; nine innings makes a game. It’s up to the players (and in some cases, Mother Nature) to decide how long the game will take.

And when it ends.

Katy, as it turns out, is pitching a masterpiece. Her chemo regimen began in spring training, and it will end on August 16. We know this because Katy’s first PET scan revealed a “complete metabolic response” (remission) and the second, undertaken last week, confirmed the result.

But as with any masterpiece, the pitcher will face challenges along the way. No game is completed without the threat of a game-changing hit by a scrappy opponent that refuses to accept defeat.

In our case, the confirming PET scan results have not obscured the fact that, every two weeks, Katy’s body is poisoned by a concoction of medicine designed to heal her. These bi-weekly medications have had a cumulative effect on her body. Fatigue, light-headedness, and nausea have been exacerbated by a vicious heat wave in Philadelphia that has made even her healthy husband feel the ill-effects.

The compounding effect of these treatments has taken its toll. Last week, we decided that the best remedy would be a leave of absence from Katy’s job. Her boss – an incredibly supportive, understanding woman – agreed that taking some time off was the right decision. For the next eight weeks, our primary focus will be on getting this beautiful woman healthy.

Both Katy and I continue to be amazed by the generosity of our friends and family. Your consistent love and support has sustained us through this difficult time. We are confident that God is working through you, and through us, in these challenging moments for a greater good that He will reveal in His time.

Nine innings in the book. Three to go.


In other news:

We have been so blessed with visits from friends and family.  Most recently Katie and Natalie from OKC came to Philadelphia to see some of the greatest fireworks in the country.  After quite an adventure we were able to enjoy a wonderful show.

Erik and I also just moved into our new apartment in West Philadelphia, we'll post pictures soon.

Thank you for continuing to support and care for us, we couldn't do it without you.

Love,
Katy and Erik

8th inning.

Guest blogger #3 - DAD

After a great lunch at Gold Standard in West Philly

"My only knowledge of cancer treatment has been with my mother and my mother-in-law -- two elderly ladies (wonderful people) but old by my standards -- that's what I knew about cancer treatment.  Boy was I in for a surprise when I went to my beautiful young daughter's treatment.  I saw a lot of young people going through treatment that I had always considered what older people when through.  What an awakening -- my beautiful young Katy sitting in the treatment chair getting drugs to save her life.  I met her oncologist, Dr. Nasta, who is wonderful.  I know now why Katy likes her so much -- she is wonderful, as are all the staff at this wonderful facility.


Now on a different subject.  I could not ask for a better son-in-law than Erik.  I am so thankful that Katy found Erik and Erik found Katy -- they are truly soul-mates.  This is the end of the eighth inning -- four more innings till the end -- and the restart of a wonderful new start for Katy and Erik."


Love,
Dad

two peas in a pod.

7th inning. (etc)

Hi friends,

I’ve been spoiled these last few weeks in having my family tell my story, so please forgive the length and tardiness.  It was so special to have my mom in town for my last treatment and to see her perspective in her writing.  While she was here we enjoyed a nice weekend in NY and met Erik as he returned from Spain… and of course went to a Phillies game (at Mets Citifield).  

In this blog I wanted to of course play catch up for the 7^th inning and also try to express how grateful I am for the love and support that Erik and I continue to receive on a daily basis.  I recently went back through all the cards we’ve received, and I was overwhelmed by how many people have taken the time to show how much they care.  I wish that I could adequately thank everyone and give that recognition here, but I know that would take quite a long time and still wouldn’t be enough.  I did want to share something truly remarkable that Erik and I received a few weeks ago.  It’s a hand-stitched Phillies quilt depicting a patch of every logo since the beginning (the year 1900 I believe) and with a very special extra patch on the underside:

We loved it even when we thought it was just baseballs

The quilt deliverers Kristin and Bethany

I was so moved by this gift, in part because this was made by a remarkable woman that I’ve never even met.  She knows Erik well, however, and I know her daughter, but someday I hope that we meet.

In other big news, last Monday, with the help of wonderful friends, including Erik, we shaved my head.  It had become such an emotional burden to pull clumps of hair out each day and clean up the mess that this seemed like the right decision.  I won’t lie and say that it was easy, in fact I cried through the whole experience, but I have hope that the next time I have hair it will mean that I am well.  For now I’m sporting the head scarf, but I haven’t completely discounted a wig, we’ll see.

As for the 7^th inning, I can gratefully say it was one of the best yet with very little nausea.  As part of the "half-way point" my oncologist recommended an ECHO (heart ultrasound) and pulmonary function testing to make sure my heart and lungs were unscathed by the chemo.  It turns out that even though I haven't noticed it, my lung functioning has been worsened by the chemo -- with the most likely culprit being the "B" in ABVD (Bleomycin).  It's also believed to be one of the least active of the 4 so it's been nixed from my treatment plan.  This was the good news because that meant no more IV Benadryl (which leaves me lethargic and nauseous) and hopefully no more allergic reactions.  (They were right!).

Since this inning I've been to Baltimore (for the Phillies) and spent some good time with friends and worked as much as possible.  For the 8th inning my dad will be in town so I'm hoping this next one is as easy as the last.  I hope everyone else is doing well too, I'd love updates anytime.  Thanks for reading.

Love,

katy

6th inning. (halfway through)

Guest blogger #2... my mom

I am tucked into Katy's window seat (oops -- Katy & Erik's -- love that guy) drinking coffee in the NY mug.  Katy has a mug from all of our "girl" trips & so I think about all our good times as I choose my mug.  I will sit here for a long while as Katy sleeps ... and sleeps.  The fatigue she carries with her is palpable, her energy is zapped ... but she is still beautiful.


Their apartment is filled with the sweetest cards & good wishes & flowers.  Their romantic story has touched many.  The caring helps.


Speaking of caring -- the nurses who attend to Katy in her treatments are awesome.  To a one, they are young, highly efficient, friendly, chatty with Katy as they know her story, & confidence -- inspiring.


Yesterday Katy's Oncologist repeated that Katy is an "A+ student".  Her response to her treatments has been perfect.  My joy is tempered however, as she has 6 more emotionally draining treatments.  They take a toll.  However, her husband, both families, friends, faith, work, bike rides, Phillies games, & an impending move fill her life.


Tomorrow we train up to NY to meet Erik returning from Spain.  He managed to get us tickets to the Phils vs. Mets at Met Stadium.  Always something to look forward to -- and looking forward to August 16th is the most focused thought of all.

5th Inning: "Complete Metabolic Response"

One-baseball-season welcomes guest 5th inning blogger Erik!

Top of the 5th, bases loaded, nobody out. The Phils have been channeling the Bad News Bears lately, with base-running blunders, dropped fly balls, and blown late leads. Katy Jo steps to the plate with a chance to change the course of the season. She knocks the first pitch out of the park. Grand slam.

Ok, so even Katy might not be able to save the Phils this season. But the 5th inning was a grand slam in every other sense of the word. Before the treatment, we received word from Dr. Nasta that the PET scan results were in. “A Complete Metabolic Response,” raved the report. In other words, Katy’s rebellious lymphatic system, which had been sneaking out of the house and driving its parents crazy for months, had been grounded. Not to leave the house again. Indefinitely.

In other words, the cancer cells are no longer cancerous. The chemo treatments are working – and not only that, they’re working ahead of schedule. The desired results for the first PET scan were half of the cancer gone (a “partial” metabolic response, if you will). The complete annihilation of the rebellious cells was enough to bring a beaming smile to our typically game-faced Oncologist, who awarded Katy an “A-plus patient” rating for the first two chemo cycles. Once a valedictorian, always a valedictorian.

After receiving the good news, we decided to celebrate – across the street at Au Bon Pain. A delicious sandwich and mac-n-cheese platter later, we were back at Penn for our regularly scheduled infusion. Despite the rapid progress, the treatments will continue as scheduled: every other Thursday through the end of September.

As I write, my beautiful wife is getting sleepy (Benadryl doesn’t mess around). We have a beautiful view from our room on the 4th Floor at Abramson, directly overlooking 34th Street and West Philadelphia. Before she got sleepy, Katy and I were discussing how convicted we are that God is working in these moments – not only in our own lives but in those around us. We have been so blessed by our friends and family. The healing power of your love and prayers is working.

Get the bullpen warmed up – on to the 6th.

champion.

Had to show off my champion.  2 hockey championships in one year!!  C'mon Flyers it's your turn.

4th inning.

Last Thursday was the 4th inning - the 1/3 mark of this season (or one long 12 inning game).  I wish I could say it's been an easy weekend, but I've really struggled with nausea, fatigue, and rough emotions.  I came to the conclusion that I really don't want to go through 8 more chemo treatments. The actual treatment day wasn't too out of the ordinary.  My good friend KT met Erik and me beforehand and stayed with me while I snoozed through the IV benadryl and walked me home. Aside from napping all afternoon on the couch, I was ok.  Friday and Saturday on the other hand were tough.  I had great company, but I was just frustrated.  I also know that part of my frustration and sadness comes from the realization that my hair is really thinning.  Sometimes I wish I could just shave it off and be done rather than see handfulls everyday, but part of me still hopes that I'll escape this side effect.


Today is looking up.  This morning Erik and I enjoyed breakfast and newspapers at a local coffeeshop followed by a very meaningful church service.  Our pastor shared her remarkable story of God's healing from stage IV non-hodgkin lymphoma that happened only after every other treatment failed.  It was so encouraging to see her standing tall as a survivor and I'm able to see that however long this season may be, it will end well.  After church Erik and I had a picnic in Clark Park and played catch, which was great practice for Citybears softball this afternoon.  I think it was in that game that I felt truly ok for the first time since Thursday.  It's always a hurdle to get from Thursday to Monday after each treatment, but this one for some reason was heavier.  But I can say from experience that Monday does come and I'm still very fortunate to have so much of my life unscathed by cancer.


Big thing for next week is a PET scan on Thursday... the hope is for at least 1/2 of the cancer to be gone.  Hoping, hoping, hoping.


Thanks friends.


Love,
katy

Happy Birthday shout out to my little bro.  13 years old on April 15th!

baptism.

26 and a half years ago my parents made the decision to baptize me and welcome me into the church.  I love looking back upon these pictures knowing how meaningful this day was.

My dad on the front left, my mom, older brother John, John's friend?, our priest... and little me

I love my dad's glasses in this one.  Also pictured is my sister Ally and Godparents Kevin and Karen.

Last Sunday I was able to recommit my parents' intentions.  I had hoped to be baptized again for a few years now but had been waiting for a community that truly fit.  That has been so true here in Philadelphia at Vineyard. 

This was such a meaningful experience for myself and 3 close friends Marco, Bobby, and Jonathan.

Bobby, me, our pastor Brad, Jonathan, and Marco

This week has felt more up and down than others.  We enjoyed a great time at the shore with 2 good friends, had a successful Citybears softball game on Sunday, and a great surprise reception for Erik at his work on Monday.  Tuesday was the most difficult day, in which I attempted to work but needed to leave after just a few hours.  Wednesday, Thursday, and Friday I rested and spent time outdoors reading... with a little tennis and softball thrown in for good measure.  Saturday I felt good as new and was able to be back at work.  More work planned for tomorrow, Monday, and Wednesday with hopefully an outdoor day on Tuesday.  Inning #4 Thursday morning.


Take care friends,
katy

3rd inning.

The 3rd inning was pretty uneventful... to be honest I slept through most of it.


The day started off nice with breakfast with Jess at Gold Standard, followed by coffee and reading (Catching Fire) on Penn's campus, and then lunch with Marco at PotBellies.


Then around 12:30 pm labs were drawn (white blood cells are lookin' good... so no shot today to boost them) and Erik and I met with Dr. Nasta, who is so so good and seems very pleased with how treatment is going.  Last Sunday I could actually feel that some of my lymph nodes are smaller or even gone, it's so encouraging.  And now plans are made for a 2nd PET scan on May 3rd (1/3 of the way through treatment, aka:  halfway between the 4th and 5th innings) to see how everything is working and to see if we need to make any adjustments.


Originally my chemo was going to be a little delayed around 3:30 pm, but they were able to squeeze me in around 2:30, right after my appointment with Dr. Nasta finished up.  Erik needed to be in a meeting for a short time in between, so Marco came back with me this time.  Everything was pretty status quo, except that instead of turning down the IV Ativan (both for anti-anxiety and anti-nausea effects) that they offer each time, I decided to see if it would make any difference... and it did.  I was out.  I hardly remember waking up, leaving the hospital, riding in a cab (with Erik thankfully), walking upstairs, and going to sleep again.  I will say it made everything go more quickly and I'm not nauseous, but feeling that out of it is odd.  I'll have to decide which is better each time I think.


No picture from yesterday... since I wasn't even thinking enough to ask.  So instead I will show you what on the schedule for this weekend:

That's right... the Jersey Shore for 2 days of resting a relaxing :)  Then back to work on Tuesday.


Thanks for checking in.
Love,
katy

PA roadtrip.

Thursday evening we were feeling spontaneous watching the Phillies recap from Game 1.  Erik told me that both the Flyers (hockey) and Phillies (baseball) were playing in Pittsburgh Saturday and that it was going to be quite a day.  Then, we decided we had to be there.  I have to admit... my state geography is a little rusty... I thought Pittsburgh was a little closer to "central PA" not practically Ohio.  


We started Saturday morning around 7am with a rental car (the ole Jeep guzzles way too much petro), Flyers and Phillies gear, and of course Dunken Doughnuts.  

Stop #1  Middletown, PA ... my old stomping ground during clinicals last year in Hershey
Stop #2  State College, PA for delicious diner food and to check out the Penn State Football spaceship

Stop #3  Clearfield, PA for an Amish quilt... couldn't pass it up

Stop #4  (and favorite!!!)  PUNXSUTAWNEY, PA the home of Punxsutawney Phil the world's most important groundhog

Stop #5  Pittsburgh, PA.  Really neat city, loved the downtown, walkable distances to the sports fields, and the rivers


Flyers:

Phillies:

Back on the road... this time the more direct route :)  Home around 4:30am... it's a good thing Easter was relaxing and we were able to have a 5pm bedtime.

MONDAY APRIL 9TH = OPENING DAY!

Clearly not much changed for me from Saturday to Monday

Phew... now it's time for a 2-day work week then chemo #3 on Thursday.


Love,
katy