Tag Archives: terminal illness

It’s MY cancer, not hers.

It’s my cancer, not hers.

I wish she could understand that, but I know deep down that this story is not just mine but that it belongs to my children, too. That this is theirs just as much as it is mine.

We ran head-first into an unexpected trial of a “cancer parent” tonight. I’m not much of a cryer and wasn’t expecting to cry tonight but I write this as tears flow steadily down my cheeks.

Brit just had a complete breakdown because she’s going back to school tomorrow after Thanksgiving break and she’s going to miss me. Well, that’s where it started.

If you know me well, you know that I have severe separation anxiety from the kids. Absolutely and without a doubt in my mind a side effect of my trying to reconcile having to leave them – in the form of death – just a few short years ago. I’m still plagued by nightmares of them calling for me but I can’t get to them. And my anxiety grips me each and every time they’re away from me. Regardless of the circumstance. I joke “yes please take them! They’re driving me crazy!” (Which, to be fair, they are) But the jokes are simply a cover for the fact that I’m miserable and worry-stricken every single moment we are apart. They don’t know I struggle with this EVERY DAY and I’m not planning on making it an issue for them ever! But while Evan can, for the most part, go off and enjoy his independence and then come back and let me know he missed me and tell me all about his adventures, Brit is just not quite like that and it kills me to see her broken down at the thought of us being apart tomorrow. This is may just be your classic “nature vs. nurture” psychology sort of issue (is this her natural personality to be anxious and worried or did she develop that because most of her life has been marred with the threat of losing her mom? Or hey, let’s be honest, did she just learn these habits from me?). All possibilities seem plausible when you dwell in them long enough.

Today, I had to go to the doctor for a flu shot and when he looked in my right ear and asked me why it looked the way it did, Brit chimed in that it’s “because Mommy has cancer”. She was matter-of-fact and unemotional, it didn’t seem to phase her, it was just a fact. But I cringed so hard because as much as you try to protect your kids from these realities, they still know and understand. And it’s really hard to watch how MY cancer has affected them. It wasn’t supposed to. It was supposed to me mine! But here we are. Just since I’ve sat down to write this, she has come out 3 separate times just to make sure I was ok and that I am still here.

And, update, now I sit on the edge of her bed writing this as she drifts off because she wanted to be able to see me. She had to know I was there.

This wasn’t supposed to be her burden, but as they grow I am beginning to see how all of this is shaping their story too.

And I feel so guilty.

Snapchat was the only thing that calmed her down a few minutes ago. I’m thanking God for His provision, for health, for my still being here with my children, and for His steady hand holding me in the moments where I can’t actually take any more.

Advertisements

It’s MY cancer, not hers.

It’s my cancer, not hers.

I wish she could understand that, but I know deep down that this story is not just mine but that it belongs to my children, too. That this is theirs just as much as it is mine.

We ran head-first into an unexpected trial of a “cancer parent” tonight. I’m not much of a cryer and wasn’t expecting to cry tonight but I write this as tears flow steadily down my cheeks.

Brit just had a complete breakdown because she’s going back to school tomorrow after Thanksgiving break and she’s going to miss me. Well, that’s where it started.

If you know me well, you know that I have severe separation anxiety from the kids. Absolutely and without a doubt in my mind a side effect of my trying to reconcile having to leave them – in the form of death – just a few short years ago. I’m still plagued by nightmares of them calling for me but I can’t get to them. And my anxiety grips me each and every time they’re away from me. Regardless of the circumstance. I joke “yes please take them! They’re driving me crazy!” (Which, to be fair, they are) But the jokes are simply a cover for the fact that I’m miserable and worry-stricken every single moment we are apart. They don’t know I struggle with this EVERY DAY and I’m not planning on making it an issue for them ever! But while Evan can, for the most part, go off and enjoy his independence and then come back and let me know he missed me and tell me all about his adventures, Brit is just not quite like that and it kills me to see her broken down at the thought of us being apart tomorrow. This is may just be your classic “nature vs. nurture” psychology sort of issue (is this her natural personality to be anxious and worried or did she develop that because most of her life has been marred with the threat of losing her mom? Or hey, let’s be honest, did she just learn these habits from me?). All possibilities seem plausible when you dwell in them long enough.

Today, I had to go to the doctor for a flu shot and when he looked in my right ear and asked me why it looked the way it did, Brit chimed in that it’s “because Mommy has cancer”. She was matter-of-fact and unemotional, it didn’t seem to phase her, it was just a fact. But I cringed so hard because as much as you try to protect your kids from these realities, they still know and understand. And it’s really hard to watch how MY cancer has affected them. It wasn’t supposed to. It was supposed to be mine! But here we are. Just since I’ve sat down to write this, she has come out 3 separate times just to make sure I was ok and that I am still here.

And, update, now I sit on the edge of her bed writing this as she drifts off because she wanted to be able to see me. She had to know I was there.

This wasn’t supposed to be her burden, but as they grow I am beginning to see how all of this is shaping their story too.

And I feel so guilty.

Snapchat was the only thing that calmed her down a few minutes ago. I’m thanking God for His provision, for health, for my still being here with my children, and for His steady hand holding me in the moments where I can’t actually take any more.

Scans and Results

Hey guys! I’m updating here because I know some of you have been following this journey with me for quite some time through my blogs and I wanted to share the good news with all of you! My most recent scans came back completely clear – check it out in my oncologist’s own words!

This is always a great thing to hear, obviously! The truth is, scan time brings about a lot of anxiety. My life is pretty much back to normal now and one little blip on the radar would mean the start up again of scans, treatments, and endless appointments. Don’t get me wrong, I’m grateful for modern medicine! But every time I see my results in and I’m about to click I have to take a deep breath and I think to myself “ready or not…”

Because I’m truly not ready for the implications of a bad scan. There’s always that fear that something is still lurking although in my heart I know that’s not true. God is good regardless, but I’m thanking Him for His provision in this moment. God has taught me so much in all of this and has given me so many opportunities to speak at churches and proclaim His goodness and I’m so grateful for that and am ALWAYS blessed and encouraged by the people I meet in these times. The Spirit is working in my life in big ways and so I’ll continue to trust and follow 💕

“As for me, I trust in the Lord” Psalm 31:6

Scans are never fun, but my heart and prayers are going to those who got bad news, who aren’t feeling well, who feel hopeless. If you’d like me to pray for you or a loved one, leave a message here or email me at morelikecantcer@gmail.com or if you know me in person, get at me!

I know some of you feel me here!! Wishful thinking, I suppose 😊

“How are you?”

“Hey! How are you?”

Do they just mean in general or, like, cancer-wise? How deep are they looking to go? How long has it been since I’ve seen or talked to this person? Have they heard the latest update that I’m fine? Am I fine? I think I’m fine…

“Fine! How are you?”

This often leaves someone looking a little bewildered that I hadn’t answered them fully.

Crap. They wanted to know more…ok where are we at here….

“Yup, scans have been good so I can’t complain!”

“But how are you feeling?”

Now this is the question that really gets me. How am I feeling? I realize people ask because they care just like that’s why I ask them the same question. I just quite never know how deep to go.

Technically, I’m ok! I’m still here and comparatively, way better than I was a few years ago. But I’ve got some issues.

I get asked about the things that still affect me pretty often so I’ll try to give a full answer here. It’s not complaining or trying to garner sympathy, I think it’s just interesting to see where cancer is still affecting day to day life. These are all things I can adjust to, it’s just that this is life now.

Although cancer is not an immediate looming threat on my life at this moment, that’s not to say I can really ever get away from it. All throughout the day every single day I’m reminded, one way or another, that my life and my body are just different than they were 5 years ago.

So here’s the breakdown:

Brain. My brain just does not work the way it used to. Surely part of it is aging and part of it is having kids (….because they age you…), but most of it is due to my brain tumor, the radiation I had to my tumor, the radiation I had on the right side of my head that hit the lower side of my brain, and part of it is residual effects of oxygen loss during grand mal seizures. These side effects are mostly memory loss, difficulty thinking of the right words for things (very common things, like “cup”), and in general a slower processing time.

Sinuses. I never had sinus issues before all of this, but my oncologist seems to think my chemo amped up my immune system in my sinuses so that any bug I get ends up turning into a sinus infection. I don’t quite understand how that all works but I’ll believe him because I’ve seen the PET scans that always always show my sinuses lit up like a Christmas tree but it’s not cancer. Strange things are afoot…

Hearing. Radiation is not over once it’s over. It continues to degrade the area that was radiated more and more over time. Since I had radiation on the right side of my face and neck, this has affected my hearing on the right side to the point where I have lost probably 80% of the hearing on that side so far (the expectation is complete loss on that side eventually).

Hearing loss has actually affected me way more than I thought it would. It’s extremely disorienting and I cannot make out where sounds are coming from. If I’m in a crowded area, I cannot hold a conversation because I can’t make anything out. It just sounds like a swarm of bees or something. Beyond the hearing, my right ear is always uncomfortable and feels “full”. All the time. I can’t get water in it or I’ll get an ear infection and those aren’t all that fun.

My face. Ohhhh, my face. I know it’s a vast improvement from where it was, but it’s still hard for me to look in the mirror for any longer than absolutely necessary. I despise doing my hair or makeup because I have to look at myself for longer and the huge scar and transplant site in my face are just not what I want to see. So I usually just don’t. I may give off a “low maintenance” vibe, and that’s not completely inaccurate, but it’s really just because I can’t stand to look at myself. It is what it is.

Thyroid. Since radiation went down into my neck, I’ve began to lose thyroid function. This comes with a whole list of not awesome side effects. Weight gain and fatigue mostly. Fuunnnn….

Voice. I love singing, I always have. I used to be able to rock a Mariah song but because of, you guessed it, radiation, I’ve lost my high range.

Port. I still have my port in my chest and as I’ve tried in recent months to get back into great shape, this thing is a pain in the butt. It doesn’t hurt it just is sorta weird feeling and can be uncomfortable especially during physical exercise.

Thigh. In case you didn’t know, I had a large transplant of muscle placed into my face and neck and that muscle came from my left thigh. I have a huge scar down the front of it and it has a huge indent down the middle from where the muscle was taken. This has become really uncomfortable since I’ve started running again and trying to get stronger physically. It really aches as I’m building muscle there and the muscles are trying to figure out how to work properly. There are still some leg exercises that my leg just won’t do.

Emotional. This one is definitely the most sneaky but the hardest to deal with. I struggle now with anxiety which I never had before. It’s unmedicated and undiagnosed but ohhh, it’s there. It’s mostly separation anxiety with the kids and it’s a real struggle most days.

I don’t like to give off the impression that life is back to complete normal after cancer. I can’t imagine that to be true for anyone who has had to deal with it. We just have a new normal and we adjust the sails and move forward regardless.

So, seriously, I’m fine! 🤗

A Season of “No.”

Imagine if God gave us everything we wanted right when we wanted it starting as soon as we repented and accepted Christ. At first, this sort of sounds awesome, right?

But what would we ask for?

We would, no doubt, destroy ourselves with indulgences and whims and would turn from Him to live in our selfishness, glorifying only ourselves.

I think back on things I’ve prayed for and can see where His unwillingness to yield to the foolish whims of my heart were ultimately in my best interest. I also see clearly where seasons of suffering, that I prayed to be delivered from, were painfully drawn out and have brought much fruit that otherwise wouldn’t have flourished if left to my own will.

This is why I will trust His “No.” or His “Wait.” Whatever it might be. It is most certainly for my own good.

The problem is I’ve grown impulsive in my faith, all because of cancer. I no longer see any need to sit around and wait, I want to be shown where to go and I want go. So being told “No” or “wait” is most definitely bothering me more than I’d like to admit.

But just as these two pictures of our lane show, clarity will come. It won’t be foggy forever. And so I’ll seek Him in prayer and scripture. I will continue to serve Him the best I know how.

And I will wait.

.

Sacrifice.

2017 word of the year for us: Sacrifice! Eric and I were called to give up a lot, I mean, A LOT! But we chose obedience over acceptance, as difficult as that was at times.

I won’t undercut those who suffer from true depression, but I have felt depression deeper this year than I have ever known even when dying from cancer. Truly. Although we know we still “have” our church family from New Holland (and love them!), it still felt like God was telling us to give that up as our place of worship. For Him. Not because New Holland is any way bad, NO, not at all!! But because it was time. For us.

We felt led to plant a church and that NH would no longer be our place of worship, after 12 years and the fact that it’s the only church home I’ve ever had, that was hard. I have cried more over these last few months at the “loss” of this family, and most specifically at the loss of being a part of the youth group, than I ever have at anything regarding to cancer. Yeah, seriously….

But God had not left us without. Not even a little. He has given us a new church and a new vision and this has been an amazing blessing to our family. Church planting is, well, WAY more work than I ever thought it would be. That’s not necessarily bad, it just is what it is.

2017 has been very hard for the same reasons that it has been wonderful: People. We love and value all of the relationships we have and that have flourished this year and we mourn the loss of those that we have lost. We have lost friendships and for that, I grieve. But I don’t want to lose focus on my goal of spreading Christ simply based on the disapproval of Christians who don’t agree with my methods. I just can’t. It’s too important and they can say literally whatever they want about me, I know the truth and so does God. And my mission is pure, regardless.

It’s been a hard time because I felt like I needed to hide all of this hurt. But our old church has supported us so much and so have many others and for that we are thankful!

I’m praying that God will do BIG things in us and through us this year as we try to reach those who do not know Him!

We are totally unworthy of this calling to plant a God-honoring church but so excited because that’s how we know God works – through those of us that are unworthy.

May His strength be shown in my weakness as my weaknesses have been on full display this year. I’ve been quick to anger. Oh! So quick. I’ve said less than kind things as a reaction to being hurt. I’ve tried to be a pleaser of people. I’ve lost sight occasionally of the ultimate goal and passion of living for the purpose and life that only Jesus can give. Sadly, even after all I’ve been through with cancer, it’s possible still to lose sight of the most important things because of hurts caused by people. How silly, ultimately.

And I’ve been listening to way too much Taylor Swift. Haha! But seriously there are times that “Bad Blood” has seemed way more appropriate to me at the given moment than any Chris Tomlin song.

I’m a work in progress.

But I can’t and won’t live to please people. God is real and He is good and I will live to please Him only. This has been a surprisingly hard realization to come to regarding all of the testing we have endured this year, but I believe things are looking up and I can’t wait to keep giving God the glory!

Wishing you all a happy and healthy 2018!!

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.