Tag Archives: terminal illness

Closure.

I’m writing this for several reasons. For one, I know that a few of you have been along for the ride but don’t actually know me. You’ve prayed for me and supported us through this so you definitely deserve an update! But I’m doing this for me as well. Although I don’t go back and read my old blogs, if I ever decided to I would for sure want this chronicled.

Yesterday, I got my port out.

Yes, it’s an awkward pic but I don’t care! Because I’m excited and I’m happy! Let me tell ya, the procedure is done in a very professional way in the OR and all that, but I was also fully awake for it. So all of the tugging and pulling against my scar tissue while I was still awake and aware was gag-worthy. For real. But…good has come from it.

For a while this port was like a security blanket for me. It felt like relief and it felt like comfort. I didn’t want it at first but once I had it, I truly came to rely on it as a source of calming, as weird as that may sound.

But over the years, I’ve needed it less and less. Treatments were stopped over 2 years ago and it became a hassle. Something that was uncomfortable and that needed attending to (in the form of getting flushed) even though it was inconvenient. As my days were spent more at home than at Penn, these visits to have my port flushed felt increasingly intrusive. And so we decided to get it out.

I need to include something here for my own records because I felt that I never had closure on this cancer stuff. As much as I could physically feel healthy and mentally detach from the trauma, there was always the reminder in the form of that uncomfortable port in my chest. Treatments didn’t stop with some triumphant “last chemo” where I ring a bell and get applause. No, I simply didn’t want to do them anymore and my oncologist understood and supported that decision.

Appointments and specialists and scans sort of petered out. There wasn’t an end. But this? This felt like an end to the chapter. This felt like the turning of a page. This port that had ingested so much chemo and has seen me through some of the hardest times of my life was about to go. And symbolically, it was impossible to ignore.

You see, God has been opening my eyes to so much recently.

I wanted to go by myself to Philly to get my port out and as I drove home, I thought I’d listen to my chemo playlist on my phone. This was literally the playlist I would listen to during infusions. I haven’t been able to bring myself to listen to it for over 2 years, but I also haven’t been able to bring myself to delete it. It’s special.

So as the songs played, I felt myself get real honest with God. You see, over the last year and a half, we have been a part of starting a church. This is good! But on the same coin, it’s been the hardest time of my life. I’ll explain.

When God called us to this church plant, it ripped me from the only church home I’ve ever known. It tore me from the comfort of the church family that was truly my family, the people who had loved and supported us through my cancer and the people that I wanted to love and support. It took us away from the teens who loved and trusted us and who we loved so very much. Being a part of this church plant meant willingly giving up a huge piece of my heart. And unbeknownst to us at the time, it meant enduring some cruel and unjust criticisms as well. And I was just not ready for that.

On the drive home from having my port removed and thinking through all of the happenings of the last few years that I had shut off from myself, I came to see a few things.

For one: difficult emotions can coexist. I’ll say it again, difficult emotions can coexist! My grief over the loss of my church family in New Holland did not mean I love my new church any less! I’ve tried to hide my grief because I felt like if I looked sad to leave my other church that it would look like I wasn’t ready or excited to tackle what God had in store for us at the new church. And that’s just not true! I spent almost a year in a deep depression over losing our old church, especially the youth. So much so God had to hit me over the head with the new opportunities we had to spread the gospel this past week as 20 teens came to our house for youth group. Praise God for His goodness!! I will always miss our old church. Always. Especially the teens. But I feel more free to experience that grief alongside the excitement and joy of creating new relationships.

And two: God showed me that I have closed myself off from Him. Ok, actually I already knew this, but I guess He showed me why.

Over the last few years, God has called me to some things that were hard. Things I didn’t want or ask for. Things I didn’t want to do and things I didn’t want to face. I’ve meditated on the verse that says, “draw near to God and He will draw near to you” a LOT over the last few weeks, and there was just a hesitation on my part to draw near to Him but I couldn’t figure out why. I love Him and I want to serve Him only, so why couldn’t I connect?

Then, in the drive home from having my port removed while I was listening to the worship music on my chemo playlist it hit me like a ton of bricks.

I’m terrified of what He’ll ask of me next.

The last few years have been so hard, such a struggle, with so little clarity that I was scared that what He’d ask next would be even more so difficult. I’m a little ashamed to even admit this, but I know I need to as some of you look at me as a Christian who just has it all together and has it all figured out. That’s just not the case.

So why even write this? For one, an update to you amazing folks who have followed this journey with me. And for two, so I can look back someday and see what God was up to in this season. I feel closure on the part of my life that was ruled by cancer and that feels so good! And while I still grieve the loss of the most amazing church family anyone could ask for, I’m thanking God for putting us where He has put us.

If you read this to the end, I’m so sorry for making you endure all that and may God bless you for it!! There’s no way I can thank you guys enough for your love, encouragement, and prayers over the years. It’s really mind-boggling to think of all of the support we’ve received and we are beyond thankful! So, thank you!!

And in case you want to know, Eric and the kids are doing great and I found a hobby and passion in cookies!

Love to all of you!! 💕

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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.

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!!