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We Don’t Deserve This

11 Apr

After Chip was diagnosed this past October, as I’ve shared before, we were both shocked, sad, scared, you name it, and I would be lying if I didn’t admit we both questioned why this was happening to us?  I mean, Chip is this really wonderful person and damn near perfect husband and father; he didn’t deserve this.  On the flip side, Chip felt I didn’t deserve this.  And above all, we both knew our kids certainly didn’t.  Not that we wished this upon any other family, but what did we do to deserve this?

Now we both find ourselves feeling that exact same way again. 

The now infamous Ginny Johnson, through our lotsahelpinghands community site, launched a fundraising effort a couple of weeks ago to help raise funds to cover our clinical trial-related and ongoing medical expenses.  The initial ask was for $22,000.  Fourteen days later, the drive concluded with a total of $56,822 having been raised!  Seriously???  That’s just crazy amazing, people.

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photo thanks to sarah!

Chip and I were driving home from Philadelphia one day last week, and I had the site pulled up on my iPhone, rattling off the names of recent donors.  As we were driving home from this city where Chip, who is only one of 200+ people to ever take this unnamed and unapproved drug we are placing all of our hopes and dreams in, we literally found ourselves completely overwhelmed by everyone’s generosity and kept saying how lucky we were!  Now just how messed up is that??  We questioned whether we had been so generous and supportive of others in the past.  Chip so perfectly said he certainly hoped so, but we both knew we had not.  Gulp.  What did we do to deserve all of this??  We both quickly added “become a better person” to our respective to-do lists.

The list of donors is just so incredibly varied and full of names of family friends and high school friends from both Conway, NH, and Marks, MS, college friends, the MS Mafia and NH contingent in D.C., teachers from Joe’s daycare, parents of Joe’s friends, people we used to work with, people we currently work with, Senate Moms from our coffee group, Republicans, Democrats, the delegation I traveled to China with in 2006(!), Chip’s Tuesday night support group, friends of your friends, my very favorite nurse in the maternity ward when Crosby was born, people we don’t even know!  Thanks to Ilona and Maarten, we even have card-carrying members of Team Kennett in the Netherlands.  We are literally spanning the globe.  Had Team Kennett existed back in the day, perhaps we could have even prevented The War of Northern Aggression from ever occurring.  I kid.  Not only was it therapeutic to rid our minds of this financial stress we were starting to come under, but it also was just downright fun watching names pop up.  It was a trip down memory lane for us both.

Some gave a little and some gave a lot, but the dollar amount didn’t matter.  What mattered was that the reach was just so far and wide, and we have to assume that if you were willing to read Ginny’s e-mail, take your debit card out of your wallet and donate even $10-$20, then you were most likely also saying a prayer, sending positive energy, feeling good vibes or at least thinking of US.  Wow.  That is so incredibly humbling and invigorating.

There is a huge part of us that is uncomfortable and embarrassed to receive financial contributions from our friends and family; however, we have amazing health insurance and great jobs, and I stay on top of our finances and am constantly trying to figure out cost-saving alternatives for us (such as receiving prescriptions via mail order at a reduced price), and our medical expenses still far exceed what we can afford to pay each month.  So more than anything, we are extremely grateful for the support.  It just allows us to focus on this fight instead of stressing out over how we are going to be able to pay our bills and afford this trial each month.  We have both made jokes about how we wonder if anyone would notice if Chip was suddenly driving a new car, since his 10-year-old P.O.S. car is on its last leg … or perhaps we could use part of the funds to finance my boob job following nursing two kids, as that would be great for Chip’s morale. But we clearly jest.  Please, please know we respect your generosity so very much that we promise to use the funds exactly as intended and will do our best to make it stretch as far and long as possible.

And in addition to all of that, you are still providing us with fresh produce for juicing and meals several days a week.  Oh, and really nice bottles of pinot noir.  I swear I did not put Ginny up to that one, but I am not complaining that she added that to our recommended dietary guidelines.

Funny side note:  Joe went outside to play this weekend, walked over to the cooler, opened it up and came back into the kitchen to let me know there wasn’t any food in there yet, but not to worry because he thought it would be in there later.  Ha!  The little man is going to grow up thinking dinner just magically appears in the cooler on the back deck.  I admit I am pretty enamored with our magic cooler myself.

Social media and blogs have changed the way people communicate about their own tribulations, and I see all of these stories of people I don’t even know pop up in my News Feed–Team Andrew, Carter’s Journey, etc.  I can’t help but wonder, are their friends and family being as equally supportive of them?  Are they lucky enough to work with incredibly supportive bosses and colleagues?  Are people helping take care of their kids?  Are people feeding them?  Are their friends and family driving and flying in from all over the place to help them for a couple of days or possibly weeks at a time?  Oh, how we certainly hope so.

Despite it all, Chip and I remain grateful, supported and loved.  Please never mistake our positivity for denial, because we both know all too well what we are up against, but we just have so much going for us. Chip’s age, our will and determination, winning attitudes, each of you, access to the best medical resources and specialty oncologists in the world all within driving distance, you name it.  There is always a first person to experience a medical breakthrough, and if anybody can do this against this rare form of lung cancer, I truly believe it can be us.  We sure as hell are committed to giving it everything we have.  I KNOW Chip deserves that.

– Sheila

hellos from crosby and joe!

hellos from crosby and joe!

From Chip

28 Mar

Five months ago this week I was told I had Stage 4 Lung Cancer, that there is no cure, and I most likely had one-two years to live. It was obviously shocking and overwhelming. Sheila and I arrived in Philly this evening ready to start the next phase of this battle in the morning, and I once again find myself overwhelmed.

The love, support and generosity all of you have shown Sheila, Joe, Crosby and me has completely blown us away. The amount of money that has been raised in the last 48 hours is staggering and we are so grateful for it, but this is about so much more than that. It’s about each of you collectively supporting us emotionally, physically and now financially. You all have made such a difference. Team Kennett continues to inspire us. We’ve got this.

(Reposted from Chip’s Facebook page)

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Sheila says: “Those cancer cells just thought they were going to get to do some more growing today, but instead, they are getting bitch slapped up in there!!” (at Fox Chase Cancer Center for clinical trial)

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“The Cros was too concerned with the Hoyas blowing up her bracket to smile for the picture.” (March 22)

Learning to Receive

8 Feb

On that fateful, shit sandwich of a day, toward the end of the appointment, I asked Dr. D if it was time for us to tell our families and friends Chip had cancer or if we should wait until the biopsy was performed, the pathology report was back and we knew specifics.  She confirmed it was time for us to tell – with the warning that everyone’s gut instinct was going to be to jump in the car or hop on an airplane to come be with us, but she encouraged us to gently bar the door.  To take some time for ourselves to digest the news and focus on this precious and remaining time together as a family of three, because once Chip started treatment and the baby was born, our house would become a revolving door of casseroles and visitors.  She was not wrong.

Dr. D also told us we were going to need help.  And LOTS of it.  I even remember her mentioning this helping hands website we could use to help organize meals, rides, blah, blah, blah, but I kindly dismissed it, because I wasn’t going to need any help.  I have it together.  I am the most organized woman on the planet, and I am a bit particular…well, downright anal…when it comes to running my household.

Once word of Chip’s diagnosis began to spread, Chip and I started getting inundated, in the best way possible, with texts, calls, and e-mails to our work accounts, personal accounts, and Facebook inboxes from people wanting to know if they could bring us dinner, keep Joe, drive one of us to our respective doctors’ appointments, rake our yard, clean our bathrooms, donate, fundraise, keep us company, leave us alone, literally ANYthing to help us.  It was all so overwhelming.  Again, in the best possible way.

I remember lying down that Sunday afternoon to try to rest for a bit when Lady Linda and Joe Boyd called to check on me.  I told Mom and Dad our heads were just spinning from the outpouring of love and support we were already receiving, and I didn’t know how I was possibly going to respond to everyone with thanks and let them know all we really needed were their prayers.  But they both stopped me right there and told me we were going to HAVE to let people help us.  It probably sounded a bit more like, “Now Sheila Kaye, you just gon’ have to let people help y’all, baby.”

Now come again?  My whole life I had been taught it is better to give than to receive, but now I am supposed to receive??  Besides, people like us don’t need help.  Those other people are the ones who need help.  I questioned my parents sudden change of heart on this subject.  Mom told me it IS better to give, but somebody has to be the recipient, and right now, it was our time to receive and, one day, we would be in a position to give again.

Then she told me something that really stuck with me.  People genuinely wanted to help us and by being willing to receive, I was actually giving BACK to those who love us.  I was letting them into our lives and allowing them to be a part of our journey.  That it would actually make people feel better to get in their kitchens and cook dinner for us.  Huh.  I swear my parents were dumb as bricks when I was 16, but somewhere in the past 20+ years, they seemed to have gotten their shit together, because she made a solid point.  Feeling my own body’s physical and mental heaviness as our new reality slowly sunk in, I finally caved.

Just like that, we had officially become THOSE people.  Deep breath.  I, Sheila Boyd Kennett, needed help.  Deep breath.  I could not do it alone.  Deep, deep breath.

It was actually liberating to make the admission and shed my Super Woman cape.

Our dear friends Ginny and Clete Johnson, along with Smitty, thankfully declared themselves in charge of organizing the troops.  Chip and I both began to feed Ginny the names and e-mail addresses of all those we had heard from, while Clete and Smitty tried to identify all of the different pockets of people in our lives and roll them into one.  Ginny built a ginormous spreadsheet, and the five of us sat for hours around the dining room table the following weekend and had a family meeting of sorts – properly identifying who were college friends, high school friends, family members, Senate Moms, colleagues, who lived in state, out of state, who could drive, keep Joe, be a key holder, you name it.  And that was the start of Team Kennett, each of you rolled into this huge network of support for us, which has become one of our greatest assets in this fight.

On the surface, you have provided us with meals, veggie deliveries, a night nurse, rides, an inspection of the air quality in our home, funds, and professional expertise regarding nutrition, taxes, and employee and insurance benefits.  In addition to all of those wonderful things, you have provided us with the gift of more free time to spend together as a family and focus our energies elsewhere, healthy nourishment for our bodies, healing sleep at night, peace of mind, freedom from financial stress, the gift of your time, with hope, encouragement and so, so much love.

I have never really questioned the “why me” in all of this, and I am not trying to come across as a martyr by saying that.  I question why Chip and why our kids but not why me; however, I do question what I am supposed to do with this.  What my purpose in all of this is.  What I am supposed to learn.  What I am supposed to teach others.  Where this is going to lead me.  I try so hard to keep my mind and heart open to these new lessons and recognize any small grace extended to us.  Trust me, I would much rather be reading one of Dr. Gail Saltz’ books or something, but that clearly wasn’t God’s plan for me.

I would like to say I have fully learned this particular lesson in receiving, but the truth is, I still struggle with it.  There are many days I feel such guilt, because all of you have lives, jobs, and your own families to take care of – yet you are taking care of mine.  I feel guilty I haven’t always been at home to see you and say thanks in person.  I feel guilty I am so behind in writing thank you notes.  I don’t know if it’s so much the act of actually receiving that is so difficult or if it’s the mere fact we have the need to receive that is so difficult, but it’s just hard.  As Chip has said, you never really want to have to read your own name on the prayer list in the church bulletin or on a rubber bracelet around your wrist, but we are so grateful people care enough to place us there.

At the risk of sounding like Toby Keith, Chip and I remain in shock and awe at everyone’s relentless kindness and generosity toward us.  It has truly been the sweet spot in this whole ordeal for us. We have eaten our slice of humble pie and gratefully receive from each of you. (But we can’t wait to give again.)

small town on a saturday night. mississippi, february 2013.

small town on a saturday night. mississippi, february 2013.