Cancer Maintenance and the Mind Games

*deep breath* Ok so tomorrow I have a PET scan.  And I’m sort of freaking out about it.  Why?  I’m not entirely sure.  I don’t have any specific symptoms screaming “cancer!!” but anything out of the ordinary plants a seed of doubt.  Plants a thought or a twinge that the scan will find something horrible and that this reprieve I’ve been granted will be over before I could even know it.  The day before a PET scan is always the most difficult.

For those new to my story, I have stage 4 metastatic melanoma.  Long, long story short: melanoma on forehead removed 2011, metastasis to neck lymph nodes found in 2013, surgery (full neck dissection with transplant), head and neck radiation, ipilimumab, metastasis (brain tumor, lungs, and hip bone) found in May 2014, keytruda, and cancer has been held at bay for over a year now.  I have officially lived a year and a half after my prognosis said I’d die before Christmas of 2014.  It’s still so wild to think about…

So every three months come scan time we do this all over again: the doubt, the fear, the crazy scenarios that play out in my mind non-stop.  Torturing me with the pain of imagining my own death.  Logically I fully comprehend that I shouldn’t even be here and that I should just be happy with whatever outcome I’m given.  But I’m human, and no amount of time will ever seem like enough.  I am desperate to see my children (now 5 and 3) grow up.  And while that seems like just an insane pipe dream for someone in my shoes, I’m at least desperate for them to be old enough when I pass that they’ll remember me.  Why?  It’s purely selfish, honestly.  I can admit that.  I’ve thought this through many many times and that truly is what it is.  And to make things even better (worse?) tomorrow, when I have scans and a marathon of appointments at Penn, is my husband and I’s 8th wedding anniversary.  What a way to spend it, huh?

Just one blip on the radar could mean the end.  And I’m not trying to sound dramatic, that’s just the reality that I am faced with every three months.  I’ve lived the last three to the fullest.  Everything has been as normal as I could have ever imagined it would be again.  When people would ask me how I am and I’d say, “I’m doing really well!” I have actually meant it for the first time in years.  It’s been fantastic.  And I’m scared it’s gonna end.  That it will be taken from me just like that.  That I’ll be back to worry, fear, treatments, and being physically helpless all over again. 

I will not lie, this is, for whatever reason, a very heavy burden for me to bear.  I almost deal better with things when they’re looking bad.  But now this mounting anxiety is hitting a fever pitch.  Today was my quarterly trip to the dermatologist (only one spot biopsied this time!) and when she asked me how I was doing (I seriously have the best and most caring dermatologist) I couldn’t help but mention that this mental struggle is weighing me down today.  “It’s always the day before scans,” I explain, fighting back tears.  “Well we’ve all been so impressed with how strong you’ve been through all of this, it’s ok to have tough days.”

Strong.  A word I do not think was ever in my life attributed to me before cancer.  Courageous?  Nope.  Brave?  Lol…no.  Inspiring?  Not so much.  But when cancer hit, I knew deep down it was an opportunity for me to grow closer with God and so I believe if these things are seen in me then it is only by His grace and mercy.

So right now, at this very moment, I’m really struggling.  It was moments like this that I would always pull out the very large laundry basket that I had in a closet downstairs that held all of the cards and notes people had given me since the very beginning of this.  I had kept every single one without exception.  Well about a month ago, we discovered that a pipe had leaked in that closet and that everything contained in that basket was completely ruined.  Gone.  It had to be thrown out and I’m just devastated by it right now. 

So I’ll just sit here for a while and cry and then head to bed.  I feel sad and lonely, and although I certainly have no reason to feel lonely it’s just what happens.  I just so desperately want to cling to this normalcy that I’ve been blessed with these past few months.  Of course, if it’s not God’s will then I really don’t want any part of it, but it sure would be nice if it was.  I mean, I’ve so much wanted to distance myself from this cancer and the identity I have in it that I haven’t even blogged in a long long time.  Denial ain’t just a river in Egypt, I suppose.

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I’m just not ready to give this up yet.  And it’s selfish and it’s desperate and it’s not even up to me.  Maybe that’s where the problem lies.  Within this frustration is the realization that I have zero control over my own situation.

God’s gonna have to help me work on this.

I Just Can’t Believe in a God Who…

A lot of people don’t believe in God.  I get that, hey, I used to dabble in that thought process myself.  But if I’ve heard one argument the most I think it would be, “but I’m a good person.  I haven’t killed anyone and I’m pretty nice, why should I not go to heaven when a mass murderer can say sorry right before he dies and go?  I just can’t believe in a God that would do that.”

Here is where God is battling against our pride.  We are told all our lives to work hard and achieve personal success, doing it yourself as much as possible.  So why shouldn’t it be the same in our faith?  Why shouldn’t I be able to just be “good” and still make it to heaven?

We don’t get this because we are good, we get it because He is good. We can’t boast about what we did to get here because we didn’t do anything to deserve it.  That is, besides chugging a big old cup of humility and facing the fact that we do actually need forgiveness.  All of us.

We all want equality and here it is, plain as day, the equality we claim to want. Across the board with zero discrimination.  And then suddenly it’s not fair.  But this is a cool thing about God – He uses our own logic against us to show us our foolishness.  

There is nothing we can do to earn heaven.  No. Thing.  Of course, our fruit and our works will show that we belong to Christ, that’s straight biblical.  But no amount of works will get us there.

Look, I’m not one to use heaven and hell as a scare tactic.  Honestly, when I accepted Christ almost 9 years ago, that wasn’t what ultimately changed my mind.  I wanted something more.  Something real.  Something bigger.  I had been chasing the dreams the world told me to for so long and I was so unfulfilled.  I was an academic with a bachelor’s degree from Pitt who was ready to make some money and get the heck out of rural PA and move onto grad school.  I was too smart for God.

But then I did something super uncomfortable for me – I went to church.  A Nazarene church.  And I’m not sure why that made a difference in my mind, but it did – perhaps because this is the church God wanted me personally to be in.  And there I saw something that I hadn’t witnessed even once in my 23 years prior.  I saw people being genuinely happy where they were and with what they had.  And they were genuinely happy to help others.  I saw people of all socio-economic standings and all ages working together cohesively for a common goal.  I know some Christians get a bad name, but let me tell ya, at least a lot of the ones I know, they do the work. No, nobody’s perfect and of course there are still struggles with greed and pride, among other sins, within the church.  But in my experience, once we truly give ourselves to Christ, we don’t have to carry the burden of self anymore and are finally free.  Free to love and to give and to serve.  Free to find where we truly fit and what our true purpose is.  And there is rest in peace in that.  Now that is a beautiful gift.  

I’ve seen this with many of the Christians I know and they inspire me all the time to do more and do better.  Not because there will be a greater prize, not out of trying to “out-Christian” each other, not because we have anything to prove, but because we all know we don’t deserve this gift that Christ gave us and so out of gratitude and love for others we will serve.  Sometimes I think we focus so much on the heaven part of the gift that we forget about the gift of freedom in this life.  The broken chains, the freedom from sin, the power of the Holy Spirit within us.  What a gift it is!!

People don’t like the gospel because it implies the need to change.  I get it, I was there once too.  Yes, come as you are, but you aren’t meant to stay that way.  God has a better plan. And yes, it takes some humbling to admit that.  Allow change, allow a clean slate and a new heart and a rebirth.  You won’t regret it.  I know how it feels to have a million questions and doubts running through your mind and none of it making sense.  And if you want to discuss anything further (civilly and respectfully of course 😉) please feel free to email me at morelikecantcer@gmail.com

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Happy Good Friday!!
❤ Kim

My Favorite Day

Maundy Thursday is my favorite holiday, if you can call it that.  It’s just this amazing, completely uncommercialized observance of the greatest act of sacrifice in history.  It’s painful to think about and hard to take in and it’s so, so necessary to keep in mind as we move into Easter.  A story marked by betrayal and undeserved punishment and culminating just a few days later with undeserved favor.

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This will always be my favorite as it is a reminder that God’s word isn’t a fairy tale full of “happy” endings.  No, it’s this story of difficult truths of a man who gave it all up for us.  Who was sentenced to death by a crowd who just a few days welcomed him and shouted his praises.  Who was a threat to power and corruption and therefore was sentenced to die the death of the very worst criminals, although of course He committed no crime.  He beat death itself but it wasn’t without suffering on His part and reminds us that we are no better than our master, as Jesus reminded the disciples on this night many years ago.  It’s a reminder that we are expected to face trials of all sorts.  It also models for us how to pray as in Jesus’ last hours before his arrest, he spent fervently praying. Jesus prayed. Wow.

It’s not altogether uplifting, but in a culture of consumeristic Christianity it’s altogether too easy to forget that this is what we need to keep close to our hearts.

This day deserves reverence.  It deserves a time set aside to soak it in and process it.  Jesus not only felt every physical lash but he felt emotions that make this all the harder to take in.  Just my two cents anyway.

Heading to church now to observe this most holy of days ❤

Trying to Forget

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Going for a walk around our neighborhood is one of our favorite activities.  Brit always grabs her stroller and puts her precious Baby Monkey in it while Evan insists on riding his tractor down the sidewalk, threatening any mailbox that stands in his way.  Eric and I always enjoy the view from behind and like that we can actually catch up with each other and get a moment to talk.  Tonight was a beautiful time to refresh and recharge and…remember.

It was a gorgeous early spring evening with a crispness in the clean, fresh air that was so invigorating and I thought to myself, “I don’t want to forget this moment.”

Just as quickly as I had that thought, a whole range of emotions came over me as I realized that the only reason I was truly taking in this sweet moment to its fullest was because not long ago I wasn’t promised this time. There was a time not so long ago that I was so close to losing my life and somehow…I had forgotten. 

I’ve been laying a little low lately – almost trying to see if maybe I could forget.  Forget what it felt like to be facing death eye to eye.  Forget what it feels like to need to “wrap up the loose ends” that we all have in life.  Trying to forget the feeling of being helpless to take care of my family.  I was trying to forget the pain and heartache and physical and emotional hardship of living with stage 4 cancer. 

And my health has been conducive this way of thinking as I am completely stable right now.  No major pains, no treatments, no appointments, no scans (until May). 

Life is, well, back to normal.  Which is all I ever wanted from the start of this!  Or so I thought.

Tonight I realized tonight 2 things:

1. I can’t forget
There are constant and inevitable reminders of the fact that, yes, all of this really happened.  My body is scarred and in several places grossly misshapen and often painful.  I still have my port.  My kids know too much about death and cancer for their own good and I realized that although I had grown slightly uncomfortable in discussing it, they had not.  There are medical bills still coming in regularly and I still need seizure meds as I still have a brain tumor and thyroid meds because radiation killed my thyroid.  I can’t forget these things. 

Our family has changed because of it. Our marriage has changed because of it. I have changed because of it. And this leads me to #2.

2.  I don’t want to forget. I see now that my diagnosis is on a similar level to that fateful day at the age of 23 where I walked down to the altar and finally found where I belong.  I met Jesus that morning and accepted His unimaginable gift of salvation and my life has not been the same since in the best possible way.  And I consider it not just an honor but a duty to share all of the ways He has been faithful to me since that day.  My battle with cancer is no longer something I want to forget because it too has so deeply changed me and affected how I see and relate to the world.

I always say that sometimes I feel too “Christian” for the secular world and feel to worldly for the Christians.  I often feel like there’s not a place I “fit”.  But God is amazing and has used this as a beautiful testimony and a way to reach other people who also feel like outsiders.  People who doubt.  People struggling with shame and loneliness, just as I once had.  I never want to forget my life before Jesus.  It wasn’t pretty a lot of times, but it shows me just how deeply and truly He can change us.  I’m forever grateful and will spend my days forever glorifying Him. 

So I apologize if I start blogging way too much!  I’m not trying to be annoying (it just comes naturally to some of us 😉) it’s just that I’ve learned so much and have had so many amazing experiences that I need to use every chance I get.  And I look at this blog as another opportunity to bring praise to God.  And honestly, I’ve missed the interaction and connection to others that I feel in doing this.  Its been a great way to meet people, pray for people, and hear other people’s stories. 

I’m not trying to forget anymore.  In fact, I will be trying more and more to remember what this journey has brought because ultimately it has borne fruit in me and I’m so grateful. 

And why would I want to forget that??

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Tears

The other night, the night after speaking to my oncologist, I laid there with his voice running through my head.  I found myself no longer just accepting the news, but trying to make sense of it, trying desperately to put it in perspective.

There is no sign of cancer in me.  My brain tumor is unchanged (possibly dead) with no new mets, my abdominal MRI showed the tumors in my liver were benign and the chest CT showed no change.  The lymph nodes in my lungs are still enlarged but there is no sign of active cancer or metastasis.  For all I know, there may not even be cancer in me at all.  I’m still here.  I’m still freaking here.

I laid there smiling through the tears because I was so in that moment. I thought about how I’m still here and still able to siphon my husband’s body heat on this bitter cold night.  Still able to hear my son snoring away through the thin wall that separates us.  Still able to check on my daughter as in her sleepy stupor she had woken up crying because she couldn’t find her beloved blanky that was of course right under her.  I listened to the dog trying unsuccessfully to scratch his ear from under our bed where he likes to sleep.  I laid on my soft pillow and let the tears silently stream from my cheeks soaking the pillow case as I soaked in my favorite sounds. 

A song began to play in my head.

You’re a good, good Father
It’s who You are, it’s who You are, it’s who You are
And I’m loved by You
It’s who I am….

I’m convinced I will never fully understand this reprieve I’ve been given, it’s too big and just difficult.  But I’m so grateful to still be here and able to give and love and feel and cry and hurt and smile and laugh and grow in the Lord and do all of the things I’ve been created to do.  In a way it feels like a chapter of my life has closed.  Of course cancer could rear it’s ugly head again at any time, but I finally feel a peace about feeling good and that feels, well, good.

Some things will take some time.  I still mentally cannot plan more than a few weeks in advance.  There is an absolute mental block there.  Something may make its way onto the calendar, but for the most part I’m still in the mindset of “day by day”.  I still over think just about everything, but I don’t think that’s all bad.  In some ways things are completely back to normal and in other ways things will never be the same, but either way I have gratitude, joy, and a peace that cannot come from anywhere but God himself.

Chris Tomlin’s ministry has been so present and important in this journey.  (Oddly enough, through a friend who knows him, he actually knows this – how weird is that?).  But here’s a song that just reaches my soul and guts me spiritually when I hear it – in a good way.  He’s one of the few artists that can make me ugly cry with great consistency lol.  Here’s “Good Good Father”
Chris Tomlin – Good Good Father

Thanks to everyone who’s been praying.  I don’t take that lightly or for granted.  I’ve seen prayer change things and I know its power and I hope you know how deeply I appreciate that support. Love you guys so much ❤ thanks again.

A Great Cancer Date

I haven’t updated on my health in a while – and that’s a good thing!  I’m doing really well and after some scans on Friday it seems as though I’m still responding to the chemo and can still be considered NED.  Hallelujah!!

Not only that but I got to go on a date today with my handsome son 😊 He has always had tons of questions regarding my treatments/doctor/etc so I figured since today I was just seeing my doc and not getting a treatment that it would be a great time to bring Evan along.

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And was I ever right!  We had a blast.  He was his sweet and charming self and brought smiles to many faces in the waiting room.  And my oncologist was very impressed with his reading abilities and how smart and well-spoken he was for a 5 year old.  Yo, when one of the smartest people on this planet tells you your kid is smart, well, that’s a proud mommy moment!  Evan keeps telling everyone he talks to about how the doctor said he should skip kindergarten and go straight to first grade haha oh my we’ve created a monster…

So now I just have a brain MRI coming up next week to check out what my little brain tumor buddy is up to and make sure there aren’t any more lurking but I’m not worried since I’m not having any troublesome symptoms.  Life is just going really well.  I’ll praise Him in the low times too but right now I just have to thank God for this reprieve because it’s been so refreshing to my soul.

That’s all I got.  I hope you all are doing well!! ❤

An Open Letter to the Woman Who Wrote to Dillard’s

To the Woman Who Wrote to the Salesperson at Dillard’s (here is the article if you haven’t heard yet):

Thank you!  Your post has shown me what great parenting of a young lady looks like.  My daughter is only 3, but I already fear for her self image as she gets older as we all know how even the most confident girls can get stuck in the trap of self hatred.  I saw your post and thought, “Wow, her reaction was perfect.  I hope I can be that for my daughter.”  I’m not really commenting on the fact that the woman tried to sell spanx, that’s her job, but more that you showed what a level-headed and grounded parent you are to build your daughter (who is beautiful, by the way) up in such a healthy way rejecting the notion that a 17 year old would ever need shapewear. 

You see, it’s very easy for me to build my daughter up, in my eyes she is as perfect as they come!  And I think all of us would say that about our girls.  But what does she hear me say about myself that will sink into her subconscious and make her learn to hate herself?  It’s that thought that struck me hard this morning as I read your letter.  I thank you for posting this so that all of us mothers can realize how powerful our words about ourselves can be to their already-fragile self-esteem.

To every young girl out there, listen up: you hate the way you look?  Trust me on this, you will look back at pictures of yourself now in 10-15 years and think, “Wow, I was crazy for spending so much time hating myself and worrying what I looked like!  I look great and wouldn’t mind looking like that again!”  It’s all about perspective.  In fact, I think it would do us all some good to stop thinking about ourselves so much entirely! 

I’ve worked with youth at church for about 8 years now, and I’ve heard these beautiful young women completely tear themselves apart.  Too fat, too skinny, boobs too big, boobs too small, butt too big, butt too small, scrawny arms, flabby arms, fat feet, bony feet, everything you can imagine.  And every time I hear it, I just shake my head because, well, they look completely perfect to me.  So I appreciate your reminder that we were created by God.  A God with a plan for us, each of us individually created with a specific purpose.  And each of us beautiful.

Mamas, this is where we come in!  We have got to stop teaching our girls to pick themselves apart or fall into the trap of self-loathing.  And here’s the thing, I’m not campaigning for a global initiative to stop this nonsense, no I’m looking at every mother of every little girl out there and saying it starts with us.  They see us doing this to ourselves, and trust me I’m as guilty as they come!  They hear us mumbling about how much we will have to work out after eating some mac and cheese, they see our look of disgust when we are checking to see if the jeans make our butts look big.  This unhealthy mindset starts with us and I’m so glad this mom spoke up and said something to this sales clerk because it showed me that, ok maybe Hollywood sells us unhealthy ideals, but maybe I’m actually helping to promote that mindset in my child by the way I speak about myself.

So I’m going to start making a conscious effort from this moment on, that my daughter will not hear me speak disparagingly about myself.  I will not fall into the trap of picking myself apart so that she too doesn’t look into the mirror only to decide what she hates about herself that day.  I will make a conscious effort to live a healthy lifestyle and lead by example in that respect, but to also be a good example of a balanced mindset.  I will bake cookies with her without lamenting how they “are going straight my thighs” and will resist the urge to say, “ugh now I have to skip dinner” or something of the like after enjoying one with her.  I will encourage her to find physical activity she enjoys and feels good at, not force her to exercise or get “in shape”.  I will (try to) be a healthy influence on her.

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She's perfect!

As much as we would like to blame advertising companies for our daughters’ poor self-esteem, maybe we need to look in the mirror first.  That is, if we can do it without picking ourselves apart the whole time…

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