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Shaving a Leg

1 Mar

Today was a hard day. Or it was for me at least. Fatigue is setting in, the cytology report showed cancer cells in the fluid drained from the pericardial region and atypical cells in the fluid surrounding the lungs, so they performed another procedure called pleurodesis (just look it up) to hopefully prevent another pleural effusion from occurring.

And today was Crosby’s 3 month birthday, and I just wanted to be at home with my little family doing our normal little family thing instead of here at the hospital dealing with all of this crap trying desperately to understand what everything meant.

crosby's 3!!

So this afternoon I went home, loved on my girl, shaved a leg, put on some perfume, pulled on my knee boots, tucked a bottle of wine in my purse, swung by Taqueria Pablano, marched back up here and decided to have a fun double date in the ICU with my hubs and dear friends. After all, we do have free babysitters so may as well take advantage of that and tomorrow IS a new day.

double date night in the icu (photo courtesy of ginny j.)

double date night in the icu (photo courtesy of ginny j.)

– Sheila

(Reposted from Sheila’s Facebook page, where she wrote this nine hours ago)

Quick Update

27 Feb

Chip is still in ICU but has been moved to a step down room. They now have his pain under control and his BP has stabilized. I went home for a couple of hours to love on our babies, shower and eat. Felt good to recharge my batteries. Joe made lots of kisses for me to bring back to the hospital to his Daddy so I gladly delivered those. Right now, Chip is resting–snoring away actually. I would usually elbow him to make him stop but am being gracious and giving him a pass since he has a drain tube hanging out of his ribs and all. Thanks for all of the prayers and messages today. Have read every single one. Love all y’all. (For all you Yankees, that’s plural for y’all.) 😉

– Sheila

(Reposted from Sheila’s Facebook page, where she wrote this in the wee [wee!] hours of the morning)

At the Hospital

26 Feb

Up until this past week, Chip had been feeling pretty fantastic. Then, on Tuesday, he felt like he was getting a head cold or sinus infection. By Friday evening, he was feeling better cold-wise, but a cough was still present. He was more fatigued and started feeling short of breath. Saturday, he tried to exercise and quickly became short of breath. Sunday, we tried to stroll with the kids, the shortness of breath reoccurred, and Chip had to sit down several times to rest.

We exchanged emails with Dr. B, his oncologist at Johns Hopkins, and she instructed us to discontinue chemo and be seen first thing Monday. Chip had a physical with Dr. D Monday morning, and we are now at Virginia Hospital Center.

Chip has pleural effusion (fluid around both lungs) and pericardial effusion (about 500 ccs of fluid around the heart instead of the usual 15-50 MLs). He is having a surgical procedure called a pericardial window at noon today (Tuesday). They will go in through the ribs to insert a tube to drain fluid off his heart, and may try to drain the lungs at the same time. The drained fluid will be sent to cytology for further testing.

His scans show that the tumor in his lung is larger, and a new tumor has shown up on his spine. All this is adding up to the fact that the Xalkori (his anti-cancer drug) has likely run its course and is no longer effective.

Chip will be in the hospital for several days recovering from surgery. That is the short term. Long term re: cancer treatment, we just don’t know. Please continue to keep us in your prayers, and I’ll update here soon. Thank you – we are so grateful for your support.

– Sheila

#cancerpatientperks

#cancerpatientperks

 

Life Lessons

12 Feb

I found the following on a friend’s Facebook page, and have read it probably a dozen times. Chip and I both love this list – lots of good life lessons here. (Thank you, Shannon D.!) – Sheila

Life isn’t fair, but it’s still good.

When in doubt, just take the next small step.

Life is too short – enjoy it.

Your job won’t take care of you when you are sick. Your friends and family will.

Pay off your credit cards every month.

You don’t have to win every argument. Stay true to yourself.

Cry with someone. It’s more healing than crying alone.

It’s OK to get angry with God. He can take it.

Save for retirement starting with your first paycheck.

When it comes to chocolate, resistance is futile.

Make peace with your past so it won’t screw up your present.

Don’t compare your life to others. You have no idea what their journey is all about.

If a relationship has to be secret, you shouldn’t be in it.

Everything can change in the blink of an eye. Don’t worry – God never blinks.

Take a deep breath. It calms the mind.

Get rid of anything that isn’t useful. Clutter weighs you down in many ways.

Whatever doesn’t kill you really will make you stronger.

It’s never too late to be happy. But, it’s all up to you and no one else.

Over prepare, then go with the flow.

Frame every disaster with these words ‘in 5 years, will this matter?’

Forgive.

What other people think of you is none of your business.

However good or bad a situation is, it will change.

Believe in miracles.

God loves you because of who God is, not because of anything you did or didn’t do.

All that truly matters in the end is that you are loved.

Get outside every day.

If we threw all our problems in a pile and saw everyone else’s, we’d grab ours back.

Envy is a waste of time.

No matter how you feel, get up, dress up and show up.

Yield.

Life isn’t tied with a bow, but it’s still a gift.

– Regina Brett, 50 Life Lessons

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.

Two Months

29 Jan

Here’s Crosby! She is celebrating her 2-month birthday with some vaccination shots later today in preparation for her first trip to the Delta later this week. – Sheila

crosby

Teeny-Tiny Update

29 Jan

I so appreciate each of you taking the time to keep up with us and way more importantly, keep praying for Chip and our family. I didn’t mean to make everyone cry, but I have decided tears of joy are the very best kind to spill.

Chip went back to Johns Hopkins yesterday for a sonogram of his eye and a check-up with his ocular oncologist. The Dr. was extremely pleased with what he saw–or didn’t see rather! He reported the tumor is now teeny tiny and much of what was showing up on the MRI was actually fluid around the retina which should hopefully continue to go away.

– Sheila

Down in My Heart

16 Jan

On Monday, January 7th, Chip and I headed back to Johns Hopkins University for a check-up, where we learned the results of his MRI and PET/CT scan.  The Saturday before, Smitty and another friend from both home and Colby, Trevor MacDonald, flew in to visit, distract Chip and accompany us to our appointment.  Chip and I both love Smitty, and he is always welcome in our home, but boy, his flying back in for this big appointment was like deja vu.  It took us back to two months earlier when Smitty had flown in to be with us when we received Chip’s pathology results from Dr. D and prognosis and treatment options from a couple of oncologists.  For days leading up to this pivotal appointment, even though we were both optimistic and hopeful for positive results, we were also very emotional, nervous, on edge, overwhelmed, and flat out scared of what we might learn.

The fact that Chip had a horrible cough for three weeks prior didn’t really help things either.  We both do a pretty damn good job of remaining positive, but when you have Stage IV lung cancer and then develop a horrible cough, it plays with your mind.  If I have a cough, then I simply have a cough, but if Chip has one, it’s suddenly THE CANCER!  Every time he would cough, it was a constant reminder to him and just made me cringe.  Not being able to deal with the uncertainty any longer, Chip paid a visit to our beloved Dr. D.  Luckily, a chest x-ray revealed he just had a nasty ol’ cough, so we were relieved she was able to put our minds at ease a bit.

After a long weekend, the big day finally rolled around, and we all made the drive to Baltimore.  One of the first things we learned was Virginia Hospital Center had sent Dr. B a copy of the report written by their radiologist … but had failed to send the actual scans themselves. So the radiologists at JHU had nothing to read, and therefore couldn’t compare the second set of scans to the first, and Dr. B couldn’t tell us anything more than what she knew – which was things had improved.

Mistakes happen.  I get it.  I do, but we were so keyed up for this appointment and all we were really learning were things had improved??  Now don’t get me wrong, improved is a pretty awesome word.  Improved is much better than worsened or stabilized but seriously, had we improved a little bit or a lot?  On a scale of 1-10, where were we on the improvement scale?  Had we improved way more than anticipated or not so much?  Improved.  I wanted numbers.  I wanted to know that this particular tumor had shrunk from this to that.  I wanted specifics.  I wanted mother. fucking. details.

The appointment itself was … well, it was pretty underwhelming to say the least.

On our drive home, Chip called Dr. D to see if she, as our coordinating physician, had a copy of the scan results and could tell us anything more.  Well, God bless that woman, she did.  She asked if I was in the car, too, so Chip put her on speaker, Smitty pulled over on the side of the road, and Dr. D started telling us what we had so longed to hear:

The spot in Chip’s liver isn’t showing up at all, the tumors in his lymph nodes have stabilized, the tumors in his lungs have shrunk in size and the cells aren’t as active, the spots in his bones are simply showing up as a sclerosis–what one might see after a broken bone has healed, and the tumor in his eye had shown the least amount of progress but had still shrunk from 10 mm to 8 mm.  

She described the results as being incredibly awesome and the best we could have hoped for.  I hate to sell Smitty and Trevor out, but there wasn’t a dry eye in the car.  Dr. D reminded us cancer is a terrible disease, Chip’s diagnosis was horrible, and the drug he was taking was very new but this day was a VICTORY for Team Kennett and to go home and celebrate.  PTL!!  

But celebrate we did not.  We were both hugely relieved, but neither of us could find the joy in our victory that night.  To steal one from my Mom, Lady Linda, we were both just “physically and emotionally drained.”  I actually fell asleep on top of the bed like a kid who had just returned from a day spent at the Mid-South Fair, with my clothes still on and without having brushed my teeth or washed my face.  I still didn’t feel joy the next day.  Or the next.  I simply felt emotionless and drained.  Chip and I both kept asking each other why we weren’t any happier than we were.  It turns out we had both, unconsciously, built these protective walls around ourselves in case the results were bad.  We were not going to allow any negative news to fully penetrate or affect us, but likewise, the incredibly awesome news didn’t penetrate that wall either.

It has taken me awhile to be able to write about this, because I am a very deliberative person, and some may argue with me here, but I do actually think before I speak.  Chip and I have been on such an emotional roller coaster over the past ten weeks that I had to wait for this particular ride to slow down and come to an eventual stop before I could open up about it.  And ten weeks?  Holy shit, it’s been a long ten weeks.  SO much has happened in the last ten weeks that it’s still hard to take it all in.  Sometimes I just have to sit and be still with it, listen to myself, regroup, and then slowly begin to put one foot in front of the other again.  To remember how to just live in the moment.  To breathe the JOY of today in.  To be grateful for this very day.

Several days later, another of Chip’s friends from Colby, Nick Gaubinger, and his girlfriend flew in for the weekend.  That Saturday night, we went to Restaurant Eve in Old Town for a celebratory dinner in their tasting room.  Chip and I agreed he deserved one meal, void of any dietary restrictions, after incredibly awesome reports we hope to continue to receive every two months, so we treated ourselves to a seven-course dinner of the chef’s choosing accompanied with wine pairings.  What an amazing meal we had.

I was worried Chip might not be able to allow himself to relax and enjoy eating “normally” again–you know, enjoy eating a normal meal of foie gras and sweetbreads–but he did relax that night.  He even made us go to a dive bar on King Street afterwards for just one beer.  He was smiling and laughing just like old times.  Right before we left to go home, he gave me a big hug and whispered in my ear, “I don’t have cancer tonight.”  For a brief moment, I had my Chip back, and I felt joy, joy, joy, joy down in my heart.  Down in my heart to stay.

– Sheila

Chip With Joe and Crosby

11 Jan

chip joe cros

The Miracle of Life

1 Jan

Miss Crosby Reynolds Kennett decided to arrive a week and half early, and I crawled into a blissful baby bubble for a few weeks afterwards followed by hosting Chip’s family for Christmas, so I apologize for my hiatus from the blog.  I am slowly and begrudgingly re-entering the real world.  Since so many have asked about her name, Crosby is Chip’s paternal great-grandfather’s name and Reynolds is my paternal great-grandmother’s maiden name and granddad and dad’s middle name.

So, HOW is Chip doing??  Physically, he is doing great and looks amazing.  He has lost about 20 pounds, but it is due to our daily juicing regimen (By the way, I am not sure if it’s curing his cancer, but my skin looks amazing!) and sugar-free, gluten-free, dairy-light, protein and leafy greens-packed diet.  Chip went to Johns Hopkins in December for his monthly check-up and to receive his bone strengthening treatment.  Since he had such a bad reaction to the infusion he received in November, they tried a different medication via injection this time, and he had no side effects so YEAH!!  They also performed an EKG and blood work on him, and the great news is the Xalkori is not having a negative impact on his heart, kidney or liver functions, so he is able to continue taking the dosage originally prescribed.

On Wednesday, January 2nd, he is having a repeat MRI and PET/CT scan performed at Virginia Hospital Center.  Those results will then be sent to Dr. B., our oncologist, at Hopkins.  We meet with her on Monday, January 7th, to learn the results of those scans and repeat the EKG, blood work and receive another bone treatment.  We are obviously quite anxious about this appointment, but since Chip is feeling so well physically and experiencing zero pain in his eye, we are very hopeful we will learn his body is responding positively to the treatment.

Days spent at the hospital are always difficult ones.  It is hard to be positive and maintain that fighter mentality when you are sitting in a waiting room full of cancer patients.  Most are old birds but there are always a few young children in there, too, which is simply heart wrenching.  It is extremely difficult receiving your injection to keep your bones strong while sitting in a room looking at all of these people hooked up to IVs receiving traditional chemotherapy.  It is next to impossible to keep your head in the game when you are lying completely still, naked and starving in a cold tube for an hour plus while your body is being scanned.

The mental game remains tough.  Really tough.  Tough for us both but especially for Chip.  We have moments and days with each other or as a family that feel so completely and totally normal that you forget.  I am so grateful for those moments, but they are also bittersweet, because when I remember that Chip has cancer, it is almost like learning it all over for the first time.  I break out in a sweat, feel like I am going to throw up, tears rush to my eyes and I go numb for a moment, but thankfully, I have the uncanny ability to quickly turn my thoughts around and just be present in that moment, in that very day and be grateful for it.  I find myself repeating our mantra–We are living with cancer and not dying from it.–to myself and to others on a daily basis.

The birth of Crosby triggered so many conflicting emotions for Chip–sheer and indescribable joy over her very existence, sadness that she will only know her Daddy with cancer, gratitude and thankfulness for her perfectness, disdain for other dads walking down the hall in the maternity ward, pride watching Joe meet and love all over “his” baby for the first time, fear that he may not live long enough for her to remember him, relieved that his treatment is a pill and not radiation that would have prevented him from even being present for her birth, pissed that he couldn’t pound Five Guys, pizza and milk shakes in the hospital with me like we did after Joe’s arrival, anger and guilt that he is putting the kids, his parents and me through this, and worry about our future.  I guess I should have, but I just didn’t see any of that coming.  It makes sense though as Crosby was born in the same hospital where Chip’s first scans and biopsy were performed, so cancer and new baby were all rolled in to one for him.

I was in a completely different mental state entirely.  I was just relieved this nine pound, ten ounce baby was simply out of my body, so in awe of her precious little nose, her long, skinny fingers that look just like mine, her fat, fat CHEEKS, her pretty blue eyes, and how amazing it felt just to snuggle with her and breathe her in, my capacity to immediately love her so unconditionally just as I had with Joe, and that MY BODY had done all of this.

So many women struggle with their bodies during pregnancy and following birth, but for me, I have never had such body confidence.  My body is simply amazing!  I loved being pregnant, and maybe it was the little brown bottles filled with dolls I was taking every six hours, but I was ready to Baywatch it down the beach.  Why had I ever wasted precious energy worrying about the size of my cankles, the dimples on my thighs (ok, maybe I am being a bit generous by referring to them as “dimples”), the moles on my face, etc. when my body was so perfect??  My body conceived this little girl, carried her for nine months, gave birth to her and was now feeding her.  I have done it twice now, and I am still wowed by the awesomeness of it all.

But while my body was busy growing this perfect little baby girl, Chip’s body was busy growing cancerous tumors.  The week before Crosby’s arrival, I was so uncomfortable.  That child was everywhere–under my ribs, pushing against my lungs and stomach, and on top of my bladder.  I felt pregnant all the way down to my toes.  I started to complain to Chip one night about how he had no idea what it was like to have this thing growing inside of your body that was completely out of your control when I thankfully caught myself and slowly closed my mouth.

Why was this happening?  Why were our bodies experiencing such different things?  How did the kale I was eating know to make our baby grow big and strong but for the kale Chip was eating to balance the Ph levels in his blood and organs cutting off the oxygen supply to the cancer cells?  How did the antioxidants in the occasional glass of red wine know to work their magic in Chip’s body but for the rest that eventually turned into sugar to stop it right there?

If my little ol’ body is capable of giving life, is Chip’s not capable of that very same thing?  I think it is.  I pray every day with every ounce of my being that Chip’s body will also perform the miracle of life.

– Sheila

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