Tag Archives: melanoma

Thank you, Chris Tomlin

Ok, so I try not to preface because usually it’s unnecessary, but I feel like I should let you know in case you don’t already just who Chris Tomlin is.  He is a Christian mega-celebrity.  The Beyoncé of contemporary Christian music.  The Sandra Bullock of worship music.  The Taylor Swift of worship leaders in America (minus the pettiness.  Well, I guess I don’t actually know his level of petty, but I’m assuming it’s lower than me and TS’s.). And I, little old me, got a personalized video message of encouragement from him! (See below).

All that said, I had a pretty cool experience this week.  As my “cancerversary” is right around the corner and we have had some pretty big life changes lately, I’ve found myself more pensive than usual.  I’m having a hard time declaring my gratitude to God for his powerful healing in my life from cancer because survivor’s guilt keeps me from proclaiming His healing glory.  And the fact that he used a missionary who prayed over me as a vehicle to showcase that power?  It’s all so wild and unbelievable, and yet being healed from stage 4 terminal cancer is my truth.  Even if just for now.  I mean, I’m already almost 3 years past my oncologist-given expiration date and that’s pretty hard to shake.  Am I boasting?  Well, maybe, but Paul feels me on this:


So at the risk of sounding like a braggart again, stay with me because I think this is kind of cool.  When I was very very sick a few years ago, I wanted to go to Creation festival but couldn’t.  I had been in 2009, and besides being introduced to a little-known up-and-coming rapper named Lecrae, I also got to see Chris Tomlin as he lead worship.  His set is firmly embedded in my memory (even with as much of my memory I’ve lost through radiation and seizures) as a very worshipful and powerful time.  Declaring God’s glory and proclaiming His goodness with thousands of others.  Just awesome.

So fast forward a few years.  I’m literally dying.  My physical body is failing.  I’m mentally prepping for death for myself and prepping my kids for my death and that this time they are 2 & 4.  I bought a burial plot and have asked for an evangelistic service with an altar call.  And amongst so many other supportive and ridiculously amazing people in my life, I have a beautiful and kind-hearted friend who works at the Creation festival.  I message her and tell her, if it’s in any way possible, could she please just tell Chris that his song “Angel Armies” was one of the most healing songs for my weary soul.  It reminded me of God’s power and, at a time when I was powerless to change anything in my own life, it soothed my weary heart to hear that God is still in this.

This is what I got in return:


Ok, I’m not deluded enough to think that some people are better or more important than others, but that was pretty cool!

I had a lot of feelings about this, but mostly I just had to smile at the naive thought that I, a dying person, would somehow get to see Chris Tomlin again in this earthly life.  He was so sweet, but so naive.  I wouldn’t be seeing him and I knew it, but I so appreciated that kind gesture!

And here I am as of a few nights ago.  Seeing Chris Tomlin live and absolutely breaking down and ugly crying during “Angel Armies”​

​   

It’s a weird, amazing, wonderful, guilt-ridden, triumphant, and awe-inspiring benchmark in this journey.  I have so much more I want to say, but for now I’ll say thanks to Mr. Tomlin for his faith that we would, indeed, see each other in the future (even if I was just a face in the crowd – I’m more than ok with that).  

Life is crazy.  Cancer is terrifying.  But God is steadfast and He is good.  Always. 

Advertisements

Why Did You Stop Blogging?

I get asked why I stopped writing fairly frequently, and it always manages to throw me off guard a little bit.  I mean, people actually noticed?  I truly love that so many people have joined us in this crazy journey and I never cease to be amazed by the endless support that even people who don’t know us readily shower us with.  So I’ll address this the very best I can and I hope it makes sense.

It was on purpose.  I didn’t just get busy or forget about it, it’s something I enjoy doing and it’s a cool way to connect with people but I felt that God told me to wait.  And so I was only posting as barebones as possible with announcements and scans and things because people are so amazingly awesome that when I would go a long spell without reporting, people worried I had died.  I don’t want people to worry!  But I came to a place where I knew God was trying to tell me something and I needed a period of silence to be able to hear Him properly.  So I pulled back from writing and did what I felt Him telling me to do which was study scripture and focus on face-to-face ministry.  Taking the time to truly connect, one on one, with the people whom I was sharing the gospel and building up in faith.  And I needed to grow my own too before I felt comfortable speaking out on a public forum about anything definitively.  My greatest fear has become misrepresenting God and I needed to learn so much more about Him before I could be confident that I wasn’t doing just that.

I also felt, and maybe I was projecting, that people were getting sick of me.  Tired of the same old story.  I know that there are some people who are less than enthusiastic about our recent endeavors, but I also think I was sick of myself.  If I’m being honest, I had been putting way too much stock in what people thought of me and was fueling myself off of the positive things people said about me.  It was a tough realization that I was worried more about what people thought about me than what God thought of the message I was bringing, so I needed to step back and take a breather.

I believe that respite has done me some good and I feel God has not only laid a message on my heart but also a burning passion to share it.

But how?

I have this platform in my blog that is really cool and can be effective, people have suggested I write a book, I just didn’t know what to do with this.  I love writing and that seemed appealing to me simply because it’s something I enjoy, but again, we would be back to a non-connective way to reach people.

So I’m going to open myself up to doing the best of both worlds and try to share my testimony, my crazy cancer story and the message that God has placed urgently on my heart by speaking.  Well, that is, if anyone wants to hear me haha.  Over the years, I’ve had the opportunity to speak to many groups and in churches and it’s always so much more difficult than simply writing but much more meaningful because there’s personal connection and dialogue.  And I never get tired of changing something I’m going to say last minute because the Spirit moves then hearing someone tell me that that specific thing was impactful to them.  God is so amazing!!  And I so much long to see revival in the American church that I’m willing to get really uncomfortable for it.

And please know, this is not self-promotion.  In fact, I struggled with how to convey this so that it didn’t come across haughty or self-righteous or that I think I’m so special or talented or whatever but my husband has been telling me for a few years that I need to put myself out there for this.  And I think I finally have a message worth sharing along with this crazy cancer testimony.  And I’ll put it out there, I’m not an especially good speaker, I’m just passionate and want to share it.

So I’ll say this, if you or your church is looking for someone to come and speak, I am willing.  Women’s groups, youth groups, cancer groups, Wednesday night, Sunday morning, secular groups, (I’ve even spoken to sports groups believe it or not.  And if that’s not showing God’s sense of humor I’m not sure what is!)  Anyway, my point is, whatever it is, even if it’s only 4 people, I’m in.  I don’t, and will never, charge and there’s no expectation of any financial reimbursement whatsoever.  I just want to see revival in the church and to see God be glorified through my willingness to live in obedience, even if it means being uncomfortable.  And public speaking, for me, is very uncomfortable!

I’m not looking to be famous or well-known or anything like that, in fact that’s a super cringe-y thought, honestly.  I’m not going to promote myself or anything like that.  It’s just that I feel like I have this crazy story for a reason, and like the woman at the well, who was so consumed with Jesus after her encounter with Him, I just want to go and tell it!  John 4:39, y’all!  And I’m not like trying to do this for a job, just putting it out there that if you need someone and think I would be a good fit, I’m here.  I’m in PA, by the way.

Maybe no one will take me up on this, and that’s ok.  I have a few “gigs” coming up that I am really looking forward to and really enjoying prepping for.  But I’m putting it out there because, well, I feel like I have to.  If you want to get ahold of me, you can email me at morelikecantcer@gmail.com, can comment here, or if you know me in person, facebook me or call me and I will try my best to make it happen.  I’ll do my best to respond so if you try to contact me and I don’t respond, assume I didn’t get it for some reason and maybe it was the wrong email address or something.

But What If

“But what if you are sick?!” She questioned, bottom lip quivering, with all of the composure a 4 year old can muster.  My mind raced with all the intricacies of cancer and how best to soften that blow for a child.  Teary-eyed, I explained to her that if that was the case, that God would take care of us.

But she didn’t want to hear that.  She wanted to hear that Mommy was ok and that Mommy wasn’t sick.  My little girl, who is usually an eager sleeper, refused to go to bed because she knew when she went to sleep that when she woke up I wouldn’t be there.  

So much for routine scans!  “Routine scans” are a mysterious blessing not afforded to all cancer patients and not guaranteed to us at any point.  There was a time in my cancer journey that those words, “routine scans”, sounded like a pipe dream.  Literally something that just wasn’t for me because my time had come and gone.  I always feel great until the night before scans.  And even then, the bad feelings are usually reserved for just me.  But tonight, my daughter caught wind of something that she never really fully understood before.  Yes, Mommy was sick through most of her life but from what she can remember, Mommy has always been there.  Tonight as I laid her down for bed, she wrestled with the fact that I wouldn’t be there when she woke up.

“Mommy just needs to go to the doctor for the day so they can tell me I’m not sick!”  I told her.  She seemed relieved at first, until she thought about it more.  But what if…

Our son is almost 7 and he has always just sort of understood all of this.  Not that it hasn’t been hard on him, but he always took it in stride and seemed to understand.  He didn’t like when I wasn’t there but he got it.  This is the first time Brit has asked so many questions and she just is not ok with the answers.  And I don’t blame her, I just wasn’t ready for this tonight.

Tonight as I was laying with her while she fell asleep (something she begged me for tonight, and never does this) she kept trying to figure out ways, through tear-soaked cheeks that she would get through tomorrow.  She finally said, “Ok Mommy, I will sleep as late as I can then pretend you are at the store and will be home at dinner.  Mommy, promise me you will be home by dinner!”

Of course I can’t promise any such thing, but I see my broken-hearted child before me.  Faced, for the first time in her life, with the understanding that Mommy may not always be there.  And so I try to assure her, with as much confidence as I can muster, that I will do my absolute best to be home for dinner tomorrow.  

My son comes out of his room, curious as to why his sister is crying.  And I have to tell him that he needs to be there for her tomorrow and things will be different but that he can make sure she’s ok.  On the surface, I’m only talking about tomorrow.  But in my heart, I know I’m talking much longer term.

What if?  Well, if something shows up, then I will try my best to be here.  And if I can’t, I need him to step in and help her when I can’t.  It’s symbolic and it’s heavy and it’s real.  I have scans tomorrow and they may be just fine.  But what if…

.

Perspective…

Over the past few weeks, I’ve used this word to calm me down in the midst of emotional turmoil.  There have been a lot of exciting things happening (our church plant!! So amazing.  Will update on that later 😊) but also a lot of…not so great things.  Without going into detail, just know that my husband and I have been attacked more in these last few weeks and have had our names dragged through the mud and, honestly, it was really a difficult time.  I like people to like me and to understand where I’m coming from so it’s really hard when you find out you are being grossly misrepresented.  It hurts.  And it sucks.  And it’s completely unnecessary!

Perspective.  I’ve reminded myself that my eternity is not defined by what people say about me or how they perceive my motives.  Or even if they like me!  I trust only in God who sent His son to die on the cross for my sins so that I could be reconciled to Him and do His work.  Period.  If that makes me unlikeable, then so be it.  “”
I’ve come to see how wonderful it is to have people in your life who truly “get” you and support you (or call you out when you’re ridiculous).  But I’ve also realized how much time and energy I was putting into caring about things that just don’t matter.  

Let me quick check my meter for how much unnecessary drama I’m able to tolerate right now….ok, yup, it’s at zero.

Think about what you were most outraged/passionate about today, then think about this- According to stats from UNICEF, 29,000 children under the age 5 have died TODAY from preventable causes!  29,000!!  Starvation, diarrhea, lack of access to vaccines, dehydration, and parasites top the list of why.  You see what I mean?!  There’s just no time for nonsense, there is work to be done. 

Don’t get me wrong, it is completely possible to care about a whole bunch of things all at once, absolutely.  And I love being a part of dialogue where all sides are heard and valued.  I just refuse to believe the worst in people so I’ve chosen to always hear people out.  This has been a wonderful tactic for meaningful connection!  And I’m only sorry I didn’t consciously try it sooner.  

Disclaimer: I’m not trying to sound “better than anyone” (because if I’ve learned anything over the last few months it’s that someone will think that) but just to make us think and, yes, give us some perspective.

Get this, I even stopped blogging because I was worried what people would think of me!  They would think I’m annoying and self-promoting, self-righteous and selfish.  I don’t care anymore.  What I do care about is people.  People who are hurting and suffering here and all over the world.  And I intend to do something about that.

Jesus was very clear and I take his commands and those of the disciples very seriously, so instead of worrying about what others think (and by doing so stopping my effectiveness as a disciple of Christ), I’m simply going to focus in on what I’m commanded to do by the One who holds my heart.  If you want to be a part of this ride, you’re more than welcome to join me!!

I’m going to care for the orphans and widows, I’m going to love God and love people, and I’m going to go and make disciples.  Period.

Try and stop me.

Results are in

I met with my oncologist in Philly this afternoon and I’m just still so astounded by how this all played out.

It started with seeing my results posted online yesterday.  The wordings of the reports from my brain MRI and my full body PET scan are something I literally thought I’d never see the day.  In fact, I was a little suspicious so while I shared the news with close family, I did not spread the word just in case my homie Dr. A would say something different today.  But yo.  Check it out:

Whoa.  There was a ton less medical jargon to google and the reports were shorter than I’ve ever seen.  What is happening?!  (There was a fascinating report detailing my sinus infection seen on both scans though.  Totally rad for real.)

Then today I met with my oncologist and he was obviously very pleased with how this is all going and… he thinks it’s ok for me to stop my seizure meds!  Why is this important?  Because he can’t assure me I won’t have any seizures once I’m off of it because he’s never had a stage 4 patient go off of this medicine.

It’s nuts.  And I only say this because I’m still trying to grasp this myself.  Once you have tumors in your brain from melanoma it’s typically marked as the beginning of the end.  The meds keep the side effects as minimal as possible while tumors typically grow, multiply, and metastasize.  And here is my genius doctor with a million patients saying he thinks it will be fine but he doesn’t know because he’s never had this opportunity before.  This was super exciting!!  

Until I had to give 10 vials of blood for research purposes.  Eh whatever, I’ll be a guinea pig for this. 😎

It was a gorgeous day today and I received some really great and exciting news.  I’ve recently found it harder to deal with this topic with the kids as they get older and have more specific questions but we take it a day at a time. 

Today, as we were laying in the grass watching the puffy white clouds roll quickly past us while basking in the patches of sunlight, I told them I had some big news.  I told them that at this point they can’t find any cancer in me.  My six year old sat straight up with an open mouth and wide eyes.  They began to sing “Mommy doesn’t have cancer!  Mommy doesn’t have cancer!”  My heart both flew and sank at the same time.  My kids are fully rejoicing in this good news, but it’s also not something that I would choose for them to have to deal with if I could avoid it.  

Our life is different from cancer but I cannot say it’s worse.  I know this isn’t the case for many people and so I share this with a heavy heart on their behalf.

So….we enjoyed the afternoon.  They played joyfully in the springtime weather and I rejoiced inside knowing that I shouldn’t even be here to see that.

It was a good day.

Missing Cancer

“I actually miss it.” I said, probably a little too casually.

Her head cocked to the side as her furrowed brows conveyed her confusion.  A tight smile ran across her lips as her mind reeled with the possibilities of how she had misheard me.

“No, really.  I miss it.” I assured her.

They say that after you have a baby you forget about all of the physical agony your body just went through in the wake of basking in the joy of the new life before you.  And although I can’t say this is 100% true, I can say with complete certainty that it’s worth it.  And I would go back in time and do it again, both times, in a heartbeat.  I’ll never forget how much it sucked, but I’ll always remember that it was worth it.

When I look back on my cancer journey, I feel quite the same way.  Because even though there were so many tears and there was so much heartbreak and physical suffering, everything that happened was ultimately good.  Even if not in the moment, it certainly lead to good.  And I miss it.

When I was sick and facing death, I felt God more clearly than I even knew was possible.  My relationship with Him was solid and easy.  His words were clear and His depths seemed to have no end.  I think back and envision our times together as a literal walk side by side in a lush and beautiful garden on a warm, breezy summer evening.  Just the two of us.  The soft, sweet grass squishing gently between my toes as I beamed with pride at the chance to walk with my Father.  Side by side.  Every time I think of it, this is the image in my head and I gasp a little every time I remember this feeling.  So real.  So close.  So much love and intimacy.  

And so fleeting.

And I hate that it’s over and I hate that it’s so hard now.  I have to work so hard to find Him now.  I know He’s here and I will not forget what has done for me.  But I miss it.  I so much miss that intimacy and connection.  I know that even if I don’t get to experience that again in my life, although I yearn for it, that that has been just a glimpse of what is awaiting me when I pass.  And I long for it, as weird as it might sound.

But I thank God for the fact that not only can I, with confidence, assure someone that He really does work for the good of those who love Him, but that I can look back and actually see where that has happened.  

I was willing to die of it meant somehow that more people would find Him through my death than through my living.  And I still mean that.  But I’ve actually gotten to witness first-hand the genuine love of the Lord gripping my children and I get to walk them through tough moments in their lives and I get to see them putting the pieces together of who Jesus is and why we need Him.  I get the great privilege of serving in ministries where I can see Jesus working first hand.  I’m not sure I could have looked at parenting or ministry with such a God-centered urgency without cancer being a pressure on me to do so.  And I thank God for this every day.

Although I’m thrilled to still be here, it was never my goal to survive cancer.  Maybe I was pessimistic or maybe just realistic, but there was a point where, medically, survival wasn’t in the cards and I accepted that.  I wish I could say I had a fighter’s fire within me that just wasn’t going to give up, but that just isn’t true.  Don’t get me wrong, I always appreciate when people say they’ve found strength because of my story.  That to me is such a blessing and I’m so glad for it.  But when it came down to it, I’ve never in my life been someone who people would describe as particularly brave or courageous.  Any strength that I may have projected came only from God.  It was in my illness that I finally understood what God meant when He said that in our weaknesses is where He shows His strength!  I am, and I say this without fishing for compliments, literally as ordinary as they come.  I am awkward and self-conscious and just completely and painfully average.  

But yet somehow through my circumstances, God was able to reach people and draw them to Him.  I’m still in awe that I was able to play any small part in the growth and cultivation of anyone’s faith.  It’s beyond anything I could have dreamed of.

But a few months ago I began to feel like a hypocrite trying to comfort people in the depths of their pain when I was no longer at a place of physically suffering on that level.  And I had something, at least for the time being, that I couldn’t assure them they would have.  I had life.  I had clear scans and improving health.  I had a second chance and I knew that wasn’t anything I could in good conscience give people hope for.  That wouldn’t be fair or honest.  So I stopped writing for the time being and focused on the relationships right in front of me and how to best serve Jesus in a more hands-on way.  Not  I’ve ever been hands-off in ministry, this is just where I felt God leading.

This is something I’ve said from the beginning with this blogging stuff: I don’t want to give people false hope.  There is no hope in medicine, doctors, treatments, holistic stuff, any of that.  All of that can and will, at one point, fail us.  There is hope only in the salvation that comes from Jesus Christ.  That will never change and His grace will never fail us.  I never wanted to give people false hope and I felt that as a stage 4 melanoma survivor who is doing, well, fine, my continued blogging would do just that.  Do I want that for them?  More than anything!  But I can’t give false hope.

I don’t say this to be coldhearted but honest.  I pray for people to be healed and I desperately want that for people who are suffering but I just never found hope in that.  Hope comes from knowing Jesus is who He says He is and did for us what He said He’s done.  God doesn’t change or fail us or leave us.  He may allow suffering but if we embrace it and try to use it, it will be used for good.

I’m just lucky enough somehow to be able to have been around long enough to see some of this good happening.  I’m so appreciative of people who have shared with me how my story has helped them or a loved one.  And because of that I am much more conscious about telling people how much I appreciate them and how much their stories have helped me.

It was just so beautiful.  It was simple.  It was clear and fresh and everything good.

And I miss that.

But wow am I glad to still be here.

.

It’s My Cancer-versary…

There are lots of things in my life that are amazing and awesome, but this is downright unbelievable.  It’s crazy.  Insane, actually.  Today marks 3 years since I was diagnosed as having advanced stage malignant melanoma.  So much has happened (and if you’ve been with me from the beginning you’re well aware of that) but as I soaked it in today through all of the wonderfully mundane things I did, I realized that so much is the same.  How can this be?  How can my life look so normal?  It’s unfathomable (don’t worry, I’ll run out of adjectives eventually…)

It’s wild to think that three years ago today I was at work in our church office with my cell phone right beside me just waiting for it to ring.  I already knew.  I knew I was sick but there was that small glimmer of hope that they were just wrong.  That the biopsy would show the lymph nodes were benign.  That it was all just a crazy scare.  

I’ll never forget taking that phone call.  Hearing those words.  Trying to soak in everything it means to have cancer while also just trying to figure out the logistics of getting an appointment at Penn and the scans I’d need to rule out more metastasis.  How would I get there?  Who would watch the kids?  What am I supposed to tell my one and two year old?! It was right then that I learned that dealing with cancer is an existential awakening as well as a logical, practical process.  There were steps and protocol and buttloads of appointments.  Appointments for days.  And scans.  And more appointments.  More specialists.  Endless specialists.  (Here we learn how good it is to have cancer in America.  We are fortunate to have this level of care and for that I’ll always be grateful.)

It’s been 1,059 days since I heard the words, “You have cancer.”  And not any part of that was easy.  Not physically, not emotionally, not relationally, not spiritually.  The surgery, the radiation, the chemo.  All of it was awful.  It was awful for me and everyone who knew me.  I don’t say that to sound conceited, but you don’t realize it until you have it that cancer affects everyone you know.  And it’s hard to watch.

And then came that little part where we were told it’s terminal.  I’m going to die.  And not in the philosophical sense of “oh we are all dying aren’t we?” but in the “buy a burial plot, tie up all the loose ends that you can, and look at these hospice pamphlets” sort of way.

I was told I wouldn’t live past Christmas 2014.  That was when they found my brain tumor and I was told the cancer was “exploding in my body”.  They would try to slow it down, try to control it of they could, try to zap it as it popped up, but at the end of the day, the term “quality of life” was thrown around much more than one would like to hear when they are 30 and with a young family.  

669 days.  I’m 669 days past my expiration date.  669 glorious, beautiful, painful, crazy, wonderful days.  It’s absolutely baffling.  It’s something that makes me want to stand up and cheer and it’s something that without exception brings shame and guilt.  Every single time I hear about someone who has passed from cancer, all I can think is “it’s not fair. That should be me.”  Survivor’s guilt is real, and it is painful.

But I’ve grown.  I’ve loved more radically.  I’ve reached out more.  Been a better mother and wife because of this.  I’ve been able to watch my kids grow and learn and be awesome little people.  I know people who don’t like to think of their cancer as a journey, and that’s ok.  But for me it absolutely has been.  I’ve allowed the Lord full control of my entire life and have trusted the Spirit in times when I could not possibly do things myself.  I’ve learned that God has a sense of humor in that I’ve been privileged enough to have been able to (and continue to) share my story in many churches and at cancer events.  I hate public speaking, but I love the Lord and wish to be some small part of furthering His kingdom so I’ve (sometimes with grumbling) agreed to do His will here for as long as I possibly can.  I’ve learned how to say yes to God, unquestioningly.  And that’s been the best part.  

And I’ve learned that, above all and through everything, my only goal is to spread hope.  I wish I could honestly say that I was interested in giving people hope that they may survive cancer.  But I can’t and won’t do that.  Because I never want to lie to people.  But I will absolutely tell people about the hope in Christ.  The hope of peace, purpose, and a love that surpasses anything Hollywood can concoct.  Hope in something very real and absolutely true.  And hope that through Him, our sufferings are not in vain.

I’m still here.  I don’t understand any of this, and of course my prognosis is still guarded, but I don’t feel cancery.  I don’t feel like someone with cancer.  Although mentally it will always be there and physically it’s statistically very likely to be an issue again in the near future, I feel good.  And have peace.  And, Lord willing, tomorrow I will celebrate 670 days past my expiration date.

Thank you to everyone who has been a part of this with me.  Whether walking alongside me physically or just hearing of my story and praying.  I just love you all so much.  

Happy Cancerversary to me…

Just a month before diagnosis. Blissful ignorance…
After my first radiation treatment (and about 1 month post neck dissection surgery)
I know it’s gross, but this is what radiation does, folks
Zapping my brain tumor with gamma knife
Dat port tho

I’d do it all again in a heartbeat ❤

.

.