Big

8 Jun

I know, I know, I know–I am basically the worst blogger known to man, but as I wrote in “Get Up Off the Couch,” this whole thing was Chip’s idea in the first place, so I am going to blame it all on him.  I actually started back to work six weeks ago, Crosby started daycare this week, and the single best excuse of all for having not written lately? We have just been busy doing some hardcore living!  Thankfully, things are going quite smoothly in both our home and work lives, but it all continues to be quite an adjustment for us.  Chip and I both find work to be a great distraction, and personally, it’s been fun getting dressed up again and engaging with grownups about something other than the C-word or how Mickey and Donald can possibly swing their legs and arms over to each side that far making the Hot Dog Dance essentially impossible for any real live human to do without falling down.  Since my return to work, I haven’t been able to find the time to write or exercise, so I am going to continue working on making both of those a priority, because my little world just doesn’t feel right without having those two things in it.

Chip is thankfully in an amazing place both physically and mentally right now.  Since he resumed the trial six weeks ago at a lower dosage, his labs have continued to be normal and stable.  We are now on a schedule where he goes to Philadelphia every 21 days, which is huge considering initially we had to go up once a week for six straight weeks.  Blood work is performed and the next cycle of his oral chemo, LDK, is distributed at each appointment, and he alternates between receiving a bone-strengthening injection, Xgeva, and having MRI and CT scans performed every six weeks.  Make sense??

And then he has to have lab work performed locally the week prior to us traveling to Philly, and he sees his ocular oncologist at Johns Hopkins every eight weeks, so we manage to have one “free” week every six weeks.  I still have to give him a shot every night to prevent blood clots from forming and although I have gotten used to sticking him, I HATE it when I walk in the bedroom and he has already fallen asleep.  It just makes me sad to have to wake him up to stick him.

His most recent set of scans was very encouraging.  The scans showed up to an 80% reduction in the number and size of tumors than the previous set of scans performed during our interview for the drug trial at Fox Chase two months earlier.  Smitty and Dave Cuzzi flew in to accompany Chip on this trip so I could stay at home with the kids.  They were able to view a side-by-side of the scans, and they all reported the results were truly amazing to see.  Two disclaimers:  1.)  Even though I love and trust both Smitty and Dave to share mine and Chip’s mindsets and approach to this, I was still quite anxious not being there with him, but Chip is quite anxious with us both leaving the kids overnight when Lady Linda isn’t in town, and it’s far more important to serve Chip’s needs than mine, so I obliged and stayed put knowing I was still helping him by providing him with peace of mind on the home front.  2.)  We never knew how much the tumors had increased after the Xalkori played out and he was off chemo for five weeks, so we don’t know where we are in the overall standings, but any way you slice it, an 80% reduction is pretty friggin’ huge and moving in the right direction.

The one majorly disheartening bit of news was the spot on his brain remained the same.  Record scratch.  Back up.  “Spot” on the brain??  Thanks for the great news and all, Dr. L, but we never knew he had a spot on his brain in the first place, so we both appropriately freaked out over this news.  After sitting with that bomb over a weekend, we just had to delve into that new development a bit further.  To our knowledge, the lesion first appeared on the MRI performed two months ago, it hasn’t changed in size, and it’s technically too small to be classified as a tumor so yeah for that.  #silverlining  Inhale, exhale, deep, deep breaths.  We just have to grab on to whatever good we can.

On the night the boys were in Philadelphia, I walked upstairs to find a note from Chip sitting on my pillow.  Of course it made me cry my eyeballs out, but it also prompted me to pick up one of my old journals, and I started reading through it.  Over the course of our dating life, about Chip I had written, “He loves SO well.  He loves me, his friends, his family, and he’s not afraid to show it.”  “He cries.”  “We name our babies.”  “He drinks to get drunk.  He eats to get full.  He laughs out loud.  He yells at the tv.  He likes his music loud.  He loves country music.  He loves Christmas music and Christmas decorations.  He loves bars with jukeboxes.  He kisses dogs on the mouth.”  “I love his charisma, his heart and his passion.”

Throw up in your mouth alert:  On our first wedding anniversary, Chip and I started keeping a journal together–I write about our current jobs, where we live, how we are celebrating our anniversary, what bottle of wine we had, etc. Then we each take the book and write down the top five highlights of the year and then we compare notes, and most often, we have identical lists.  It’s fun to go back and read, and we hope the kids will enjoy having it one day.  Chip, I apologize if I have just completely stripped you of your man card.

Last October, I popped our anniversary journal in my purse.  There were just so many blank pages left that needed and deserved to be filled.  To be filled with us.  So, on that day, on Halloween to be exact, while Chip was having a piece of his hip bone removed at Virginia Hospital Center, sitting in the waiting room all by myself, I started to write to him. I wrote of how we did have this–together.  How we were going to handle this with love and grace.  And I wrote to him of how big our love was and how big he lives his life.  Hell, in our house, we even eat big chicken, so ironically, it suddenly made perfect sense that he had really BIG, fucking cancer.  Because big is just how he always seemed to do things.

The other night, “Dream Big” by Ryan Shupe came up on my iPhone.  Chip and I had our first dance to this song at our wedding reception.  I started to listen to the words.  Really listen to them this time.

When you laugh be sure to laugh out loud
’Cause it will carry all your cares away
And when you see, see the beauty all around and in yourself
And it’ll help you feel okay
And when you pray, pray for strength
To help you carry on
When the troubles come your way

And when you dream, dream big
As big as the ocean blue
’Cause when you dream it might come true
When you dream, dream big 

Perfect.  Absolutely perfect, because no matter how big that cancer ever gets, to borrow one from the great Lindsey Buckingham, it can never be bigger than our Big, Big Love.

– Sheila

P.S. The drug Chip is on (LDK378) recently was the subject of a presentation at the American Society of Clinical Oncology’s annual meeting. You can read about LDK clinical trial results here: Novartis Breakthrough Therapy LDK378 shows a marked clinical response in patients with ALK+ non-small cell lung cancer

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13 Responses to “Big”

  1. Beth Ballard Raffety June 8, 2013 at 5:53 PM #

    You are amazing.

  2. Kate June 8, 2013 at 7:52 PM #

    You totally rock and your love is beautiful. You and your family are always in my thoughts and prayers. Continue to live and love BIG….

  3. Mandy June 8, 2013 at 8:37 PM #

    Your strength amazes me, your love makes my heart happy! Keep living large and loving on those beautiful babes!❤❤

  4. Cassandra June 8, 2013 at 11:36 PM #

    Every time I read one of your posts (Hold that thought. First I’d like to say something, without sounding completely selfish, please don’t make me wait so long for your inspiring words…) you make me stop everything I’m doing. Stop worrying. Stop stressing. Stop holding grudges. You somehow make me feel, I don’t even know how to explain it. I guess enlightened? When I read your words it’s like I’m learning the very meaning of life. I wish I could make all this go away for you and your family. I find comfort in knowing this… You got this!

  5. Jeanne Doherty June 9, 2013 at 9:17 AM #

    Thank you for the new story. I think there is not enough Big, Big love in this world and I am so happy that you have it there. When Jared had his senior prom in 2005, there was a quote that was the theme of the Prom. I truly believe in this saying and hope that it will mean as much to you and your family. “Life is not measured in the number of breaths we take, but in the moments that take our breath away!” It sounds like you have already had a lifetime of breathless moments with so many more coming your way. Here’s to living breathless!! Much love and prayers, Jeanne

  6. sarah montgomery kennett June 9, 2013 at 1:13 PM #

    Big, Big love to you guys, XOXO
    Sa & Tan

  7. ted kramer June 9, 2013 at 3:03 PM #

    Sheila…you are amazing with your love, openness, faith. style.. and did I mention Love. Chip deserves you!

  8. Elizabeth Hadley June 10, 2013 at 1:23 PM #

    You both are amazing, as always! Thanks for sharing your life and journey! Big hugs and prayers for Team Kennett!! Love, Elizabeth

  9. Starr Hill June 10, 2013 at 7:58 PM #

    Love Big. Dream Big. Live Big.

    My love to Team Kennett.

    Starr

  10. Ed Boquist June 12, 2013 at 7:06 PM #

    Chip, Shelia, Joe and Crosby you will be in my constant prayers and thoughts…Chip I just learned today of your journey…I am here for you & Team Kennett..

  11. Diane Rossi June 16, 2013 at 1:14 AM #

    Loving the blogs whenever you post. Thank you and sending love!

  12. Larkin and Ron June 17, 2013 at 4:52 PM #

    Love the catching up, and so much love the pix. Joe is clearly going to be the cover model for LLBean or Ralph Lauren or both, for long enuf to send him through college and med school and law school and astronaut school, and Cros is just…everything. Love the news that length of time between blogs is because everybody’s doing “normal life” (with adjustments). When we saw this, we thought of you guys. Only way to go:
    http://www.buzzfeed.com/daves4/things-to-keep-in-mind-if-youre-having-a-bad-day

  13. Weezie1946 June 20, 2013 at 8:24 PM #

    You both have “big” hearts…loved catching up…still praying !

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