Tag Archives: brain tumor

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…

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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.

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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 ❤

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Cancer Maintenance and the Physical Battles

I did receive some good news recently – another clear PET scan!  I’m thrilled and my oncologist even thinks it’s ok now to do brain MRI’s just every 6 months instead of 3 which is really cool.  I never thought I’d get to a point where my scans would become farther apart.  I mean, I was always thrilled for my friends who got to do that but I never thought I’d see the day.  And I’m glad I am.  So in August I’ll get another PET scan and a brain MRI at that point. 

And I don’t care if this sounds cheesy, but I would be absolutely crazy not to thank all of those who have been praying for me and my family and who have been so amazing and supportive.  I covet every prayer and have taken to heart every message and comment on here with deep appreciation.  You guys have been amazing through all of this and although my thanks is all I can give, I do give it sincerely and with a heart that stays humbled by the fact that I don’t deserve all of this.  Thanks guys ❤ 

So just for the sake of keeping you amazing peeps updated, I’ve not only had the pleasure of getting my brain MRI’s spaced out a good bit, I’ve also been doing something else I never thought I’d be around to do: maintenance rechecks.

I know, glamorous life, right? Yup, be jealous!  Joking of course, but the truth is it was almost exactly two years ago now when I was pushed to stage 4 with the discovery of my brain tumor and other spots of metastasis, and at that point I was having regular rechecks with almost 10 doctors.  When things started to look grim, the only logical decision was to simply stick with my oncologist for the big “cancery” stuff and let the rest be.  I mean, was it really necessary to keep having rechecks with my neurologist, radiation oncologist, surgeons, and everyone else? No, it really wasn’t.

But now, I’m, well, still here.  And things need upkeep so I am starting up seeing a few more doctors again, but it’s not bad.  I’ve seen my dermatologist continually every three months through all of this and my most recent visit showed another severely atypical mole biopsied that now needs a wider excision (no biggie, I get at least one of these taken out at every single appointment.  Then I get to go back and get the chunk removed and get stitches and then a few weeks later get the stitches removed).

I also have been better at seeing my dentist. Didn’t seem so important when death seemed imminent, but now since having radiation to my head and neck can cause major dental and jaw problems, it’s imperative that I keep up with that.  (Sidenote: after head and neck radiation you’re supposed to see your dentist every 3 months forever.  But that’s expensive, so I’ll stick with every 6 months for as long as I can get away with it.)

Last but not least today I got to see my Ear, Nose, and Throat specialist.  I have a huge soft spot in my heart for her for many reasons, not only does she know her stuff, she was the one who diagnosed me and insisted I go to Penn.  I wouldn’t have known where to go and if she had told me to go to a local hospital I would have.  And I’m just beyond grateful that she got me to go to Penn as there I have not only had access to the best doctors in the world, but I also got into clinical trials that otherwise would not have been available to me.

So anyway, she confirmed what I already knew, I’m losing my hearing in my right ear as a side effect of radiation.  Also the inside of my right ear is perpetually dry and raw and painful.  Small price to pay, in my opinion. 

So these are the things I’ve been up to in case you were wondering lol!  I’m seeing now that these mental and emotional highs and lows are going to stick around and that these maintenance appointments that seemed so silly and pointless just 2 years ago are really important for me to keep up with.  I didn’t  think existing this far past my expiration date was a possibility, but now that it is not only a possibility but my actual reality, I’m trying to figure life out again.  Trying to figure my relationship with God out again.  Trying to figure out where I fit in in the Kingdom again.  Trying to discern where the Spirit wants me.

It’s confusing and wonderful, frustrating and beautiful.  And I’m so happy to be here for it.

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This pic has nothing to do with anything. But aren't they the cutest?? 😉

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.