Tag Archives: chemo

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.

.

A Funny Thing Happened Yesterday…

I needed a brain MRI and chemo yesterday.  This is a completely normal sequence of events at this point in my life and I had no reason to believe that anything besides exactly that would happen.  But much to my surprise, that is not at all how yesterday went.  It was a frustratingly fun day that was filled with lots of conflicting emotions.

So my friend and I leave for Penn a little after 6:30am and endure the ever-so-enchanting Schuylkill traffic.  We arrive at Penn right around 9 and immediately head in to check into my brain MRI.  Which apparently had been cancelled.  But nobody thought that I needed to know that.  So there I was, pretty perturbed already and it was only 9am.

My appointment to see my oncologist with treatment to follow wasn’t until 1:40pm!  Well, I ain’t waiting that long so I ask his secretary if I can just get the chemo without seeing him first.  She calls him and he tells her to tell me to call his cell phone.  Ooooookay….

So then I get a rundown that is something like this: in a discussion with his colleagues, they all agreed that the tumors in my liver were not melanoma mets and that I should not get any more treatments at this point (until there are tried and true mets somewhere). 

Yeah ok, so that’s good news, great news actually.  But at the same time, I’m sitting there in his waiting room on the phone with him when I hear this.  So now I start angry crying.  Thaaaat’s right, when I’m angry my super-helpful coping mechanism is to cry.  At that point my happiness at hearing that they are certain it isn’t cancer is completely overshadowed by absolute frustrstion at the fact that I travelled all that way for literally nothing.  No MRI.  No chemo.

image
(one of the best movies ever, btw...)

Yes, yes it would have been great if all of this would have been relayed to me on Monday so I didn’t make the trip for nothing.  But, we’re only human and we make mistakes.  It was just a bunch of miscommunications and things apparently got lost in the shuffle.  I’m not proud of my anger, or the things that came out of my mouth that I’m pretty sure my friend thought were pretty hilarious because she has never seen me that worked up before, but there was a silver lining.

There we were, early morning in Philly, with no kids and the day to ourselves.  So we went shopping!  Or maybe a better description for it is “walking around a mall”.  But still, we had fun.  Erica, you were the perfect person to be with yesterday, thanks for taking it all in stride and for not letting me kill anyone 😘

I’m grateful for this news and today that is overshadowing the frustration of yesterday morning.  I’m really really hoping never to have a scare like that again though, talk about your existential crisis!!  Perhaps this all happened because I was getting too comfortable in my no-active-cancer zone.  As weird as it sounds, I don’t want to forget what it felt like to be dying.  Because it was then I was really living.  Truly, I don’t care if that sounds corny.  I’ve never felt more alive, more aware, more purpose than when I was dying.  This also showed me just how swiftly this reprieve of sorts can be taken away.  The cancer can come back anytime, anywhere.  Melanoma is no joke, y’all.  So I’ll keep this experience close to my heart as we move forward with MRI and CT scans in January.

Thanks to everyone who has drawn up alongside us during this journey.  Your support and prayers do not go unnoticed or unappreciated.  I may not have health, but I have a great support system, and when you don’t have health, that is of infinite value.  You guys are amazing.  Thank you ❤

Processing the Cancer Diagnosis…Again

It’s really hard to explain how I’m feeling right now.  Part of me knew this was coming and another part feels completely betrayed.  Part of me sees the opportunity for growth again and part of me resents the notion entirely.  Part of me feels eternally hopeful and part of me feels like this is the beginning of the end.

Part of me has accepted it and part of me still can’t believe it’s true. 

These feelings have been haunting me since Tuesday morning at 4am when the ER doctor told me the news.  Frustration doesn’t even begin to describe what I felt.  I mean, it didn’t make sense.  The CT scan was to check my pancreas!  My liver should have nothing to do with this!  But alas, a trip to see my oncologist later that morning confirmed that there are 3 tumors in my liver and I need to start chemo up again as soon as possible.

I felt like I got a nice roundhouse kick in the face. 

It’s just been a lot to process.  And with tons of other things going on, I didn’t really have the time to do so until today.  The first time I’ve really been alone since it all happened was in the car this morning on the way to church, which is about a 20 minute drive.  After a few minutes, I remembered that I was alone and that I didn’t have to listen to music performed by salad ingredients so I turned on the radio and there it was.  Chris Tomlin’s “Whom Shall I Fear”.  This song was a huge source of comfort the first time around and I purposely have been skipping it on my playlists for the past few days because I didn’t want to hear from God, quite honestly.  It wasn’t that I was mad at Him, it wasn’t that I blamed Him, I just had so much frustration and pain in my heart and, as weird as it sounds, I wanted to keep it.  I wanted to be bitter.  I wanted to keep my grievance rather than dealing with it.  I’m not saying that’s healthy or mature, but it is what it is. 

God often uses music to soften my heart to Him when I’m trying to shut Him out and He definitely did that for me this morning.  How do I know for sure it was Him?  Well, the first line of the next song went “Hold it all together, everybody needs you strong…” and that’s when I cried.  For the third time since I got the news.  The first time was when the doctor first told me and it was out of complete frustration.  Last night, it was sadness because our son, who is 5, said as he rubbed my face, “Don’t worry Mommy.  When you get to heaven you won’t have cancer anymore.”  Broke my heart that he even had to think about that at his age.  And then there was this morning where there was finally some acceptance.

The Casting Crowns song “Just Be Held” had come on the radio this morning and, honestly, I wanted to turn it off.  But I didn’t.  It’s a song I know but somehow the words hit me so much differently today.  Take a listen if you could use some encouragement. Casting Crowns “Just Be Held”

So I guess I’m ready to face this, or at least getting there.  Thanks for the outpouring of love and support ❤

If your eyes are on the storm, you’ll wonder if I love you still
But if your eyes are on the cross,
You’ll know I always have and I always will

.

The Beautiful Process

If you know me personally, then you probably already know that my brain MRI and cerebral angiogram came back great.  No new tumors and no fistula in my brain.  This is, well, amazing.  And on this beautiful pre-autumn night, with Eric and Evan playing ball with the dog and Brit picking me “flowers”, I can’t help but think what the alternative to this would be.

As much as I may hate to admit it, it would probably look a lot like this but without a photographer.  Sometimes I think about what their lives would be like if I had died 9 months ago like my prognosis predicted.  But luckily, I’m still here to simply imagine that.  And I don’t intend on wasting a moment with my loves.

image

I don’t understand why I’m still here, why I’m being blessed with seemingly good health while others in my boat are perishing.  Survivor’s guilt is very real and it’s quite troubling.  I’ll never fully understand this until I’m before God and relishing His glory so I have to accept that.  Cancer may still take me before I feel ready, and I have to accept that.  I was at a point a few short months ago where I was ok with that outcome, but it seems with this sweet extension comes reservations about leaving again.

I could get worked up about my PET scan this Tuesday, but for what purpose.  I mean, have you seen tonight’s sunset??  The pale, calm shades soothe me and I feel I can’t worry about a single thing right now.  Not one single thing.

image

Luke 9:23 has been on my mind constantly lately.  I don’t know what God has in store for what I need to learn from that but I’m excited.  I had to laugh to myself as we were evaluating teens applying for leadership positions within the youth group the other night.  A common theme was not being sure what God was telling them.  I smiled to myself each time because isn’t this how we all feel sometimes?  It seems once you figure one thing out, there is a new plan.  A new vision.  This is the beautiful process.  The endless molding of us into vessels more usable of bringing God glory.  Keeps us from getting comfortable.  And keeps us from going lukewarm.  So, Luke 9:23 bring it on.  I’m still here to hear it, so let’s do this.

No, They Don’t Have a Cure for Cancer

image

If there was one stupid myth about cancer I could get rid of it would be this: “they have the cure but will never give it to us because there’s too much money in the cancer business”.  I have heard this probably 1,000 times and I honestly believe that it’s a big, steaming load.  Oncologists work long, probably often thankless hours trying to do research, surgeries, teaching others, and knowing the ins and outs of each of their patient’s cases –  all to save lives.  They do not want their patients to die.  Like I can’t even believe I had to just type that!  Honestly, if I worked in the cancer field I would be super offended by this nonsense, and I don’t get offended easily. 

Know why cancer is hard to cure?  Because it’s different in every body.  My melanoma is different than someone else’s.  Mine began and metastasized differently than someone else’s might.  Mine also responded to treatment for now, someone else’s might not.
Seriously, once you have cancer you learn 2 things:
1.  We don’t know as much about it as you’d think.  Every patient has a completely unique story and experience. 
2.  Doctors work very, very hard to try to save your life.  I haven’t had a doctor yet that I didn’t think truly cared about whether I lived or died.

Do the doctors make money?  You bet they do.  And they deserve it.  I don’t even care if my oncologist names his yacht or his Lambo after me because I bring him so much business.  I know he has done everything he can to keep me alive, and hey, look, so far it has worked!  Wait, maybe I should name something after him.  Anyway…

I refuse to believe this conspiracy theory that would literally make every human in the oncology field a huge sell-out and horrible person.  Do you even hear yourselves?? So sick of those dumb articles.  Chemo is not ever sold as a cure.  It’s something that you discuss with your doctor to see if the risks outweigh the rewards.  And you know what?  Most people choose to give it a try regardless of the success rates.  There is a very real sense of helplessness in this scenario that you wouldn’t know unless you were ever to face this yourself and most people want to at least say they tried something.

Are there things you can do yourself that can help your odds?  Sure there are.  But seriously, to the people sharing these articles and saying to someone’s face as they’re dying “they have the cure they just won’t give it to you!”, when you get cancer, where are you going to turn?  Because I’d put all my money on the fact that you’ll end up at a reputable cancer hospital in the waiting room queue for chemo just like the rest of us.

Quick Update!

Hey guys, I wanted to just quick get this out there because some of you are so kind and have been asking so I’ll just let everyone know that my spinal fluid came back completely normal!  Not to brag but my spinal fluid is amazing.  Don’t be jealous 😉 The major concern of course would be cancer cells in the fluid or inflammation that might indicate that but it was completely clear.  It’s a huge relief that I am so so grateful for!

This isn’t over though as now my neurologist wants to rule out a fistula in my brain.  That’s essentially a bad wiring, so to speak, of blood vessels.  This would explain my symptoms of persistent headaches and constantly being able to hear my heartbeat in my right ear (been going on a few months).  I figure I already have an aneurysm and a tumor up there, why not let a fistula join that partay?? 

Honestly, jokes aside, I’m super grateful for a lot of things at this point.  For family, friends, and a church family (which is an amazing mix of family and friends) who continue to uphold us in prayer, I’m thankful for family that can help with the kids when I’m feeling crappy, I’m thankful that my neurologist really cares and isn’t just going to let these headaches slide, I’m thankful that it’s not cancer (!!!), and I’m thankful to God for being the air I breathe and the hope in my heart.  This suffering really is producing in me character, just as He promises.  He has not let me sit on the sidelines but instead has continued to show me the work that needs done in His kingdom.  No excuses.  This has in turn been a huge blessing back to me.  That is actually why I haven’t been blogging as much.  Though I do miss connecting with peeps on here, God is putting lots of people and needs right before my eyes and whispering “Go.” into my ear. 

And without boring you to death, can we just agree that it’s completely unfathomable how God equips and uses us even when we aren’t qualified or don’t feel usable.  Amazing!

I will be starting with a few tests soon to figure out this fistula business.  One is a CT angiogram (piece of of cake!  I love CT scans, they are so easy compared to other tests) and the other is not so fun, it’s like a heart Cath where they insert a catheter in your groin but instead of snaking it up to my heart they will snake it up into my brain while taking xrays the whole time.  Ewww…. And here I thought I was done with these adventures!  Betcha can’t wait to read about that one…

Thanks again to all who have been praying and keeping up with this crazy story! ❤

Off To Penn (Again)…

So I am headed back to Penn today for the first time since my last chemo.  It feels cool to know I don’t have to see my oncologist (as great as he is, I associate him with bad things lol) but I’m not exactly thrilled to be getting a spinal tap!  They want to test my spinal fluid and also check that the pressure of the fluid is adequate?  Or something… I guess they need to do this to rule out things before they can just chalk it up to either a side effect of the Keytruda or a side effect of having a brain tumor that has scar tissue around it.  Not even exactly sure what result in hoping for but I’m certainly not thrilled to be getting this done although my neurologist assures me it’s not bad at all, that it’s just like getting an epidural, but I’m doubting he’s had either so what does he know!? 

Anyway, I’ll get my port flushed, will have a visual field test (whatever that is), and will be getting a “lumbar puncture” (sciency term for spinal tap).  I’m hoping I’ll be able to convince them to let my hubby get pics of the process because I’m super curious about it but know enough by now to stay away from Google images. 

The hope is that this visual test and the tap will give us some insight as to why I’m getting headaches virtually all the time.  I hate taking meds so I’m glad my neurologist wants to look into this, maybe if they find the cause they can fix it and I won’t have to deal with this anymore.  Here’s to hoping!

And just in case you’re wondering, I did actually watch “This is Spinal Tap” last night.  Even though it’s not about spinal taps at all… Eh, why not?  Any excuse to watch a Christopher Guest movie.  Same as I’d watch “Best in Show” if I was entering Buck in a dog show that next day or watch “A Mighty Wind” if I was gonna go to a folk music festival.

image
Sidenote: Buck could win a dog show. At least the talent portion! He's really good at ignoring me and chasing squirrels, that's gotta be worth something right?

I need a life….

Anyway, will keep ya updated on what we hear!