Tag Archives: terminal illness

“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! 🤗

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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.

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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”​

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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. 

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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Overwhelmed

This time last year I was planning my own funeral.  Seriously.  Things were looking so bad with my cancer at that point (mets in my brain, lungs, and hip bone after spreading from the lymph nodes in my neck), and what we had hoped would be a wonder drug, ipilimumab, just seemed to make my cancer grow faster and reach farther.  I was in a good place spiritually and I honestly felt a peace about death.  I truly believed that it was my time to go and acceptance came very naturally and with that came some of the “housekeeping” that comes along with this: I bought a burial plot, was storing up letters and gifts for my kids, I was planning a crazy, over-the-top Christmas for us under the assumption it would be the last one I spend with my family, and I was planning some of the logistics of my funeral. I’m not saying this was easy, I mourned of course for things I would miss with my family, but I never stopped trusting in God’s bigger plan for this.  Even if His plan included what I considered dying young.  

And here I am a year later.  Having lived about 9 months past my prognosis and having just had a perfect PET scan that shows I’m having a complete response to the chemo that I received about 20 treatments of, Keytruda.  Complete response.  

This was on my check out sheet from my visit to Penn today:  

I’m not delusional enough to think that I’m special or deserving of this. I am well aware of people who have been recently diagnosed, or restaged for the worse, or who have lost their battle with this horrible cancer.  I know that my result isn’t what always happens.  It’s a helpless feeling, truly.  I knew that my healing may come in the form of death, and this still may be the case (I will still get scans every 3 months and my prognosis is just a big old question mark at this point) as I am still stage 4 and this cancer is a wild card.  But for the first time in a long time, I don’t feel…cancery.  

As I drove home from Philly today, a song came on the radio and the weight of all of this really settled in for the first time.  Overwhelmed by Big Daddy Weave.  Click the blue link to give it a listen.  I’ve heard this song 1,000 times but today I really got it and I truly was overwhelmed with gratitude.  To God, to my doctors, to my friends and family, to all of you who are so kind and encouraging.  

Ok sorry, it sounds like I’m accepting an award here or something, but I’m genuinely, for the first time in 2 very long years, able to think ahead a little.  To plan a little.  I feel like there’s a chance of making it.  Of doing the things I had completely cut out any chance of.  I had shut the door on being here to experience so much:  homeschooling, seeing the kids do sports or activities, experiencing my children’s baptisms and weddings, seeing any more anniversaries with my husband, and so much more.  

It’s exciting and scary and overwhelming.  It’s living.  I’m just really really happy right now…  

Just a few months before my diagnosis…  
This time last year at the amazing flash mob my friends and community and church did for us ❤️


 And now… 
 

Can’t wait for next year!!

No He didn’t…

I got to thinking today when I was (wasting my time) on facebook and I came across a picture that seemed harmless enough.  It was a picture representing what Easter meant to someone and one of my friends had posted it.  Cool.  I clicked on the picture and found there were like 15,000 comments on the original post.  I got lured into reading some and was just amazed at the fighting, the rudeness, the condemnation, the confrontation, and the ugliness.  From believers!  And it turned my stomach.  Partially because I have many, many times been the person making those comments.  But today, instead of fighting back, it just made me think about what Jesus would have to say about it. 

When Jesus gave commands, He was speaking to His followers and fellow believers, as they were the ones He was discipling to be a light to others who hadn’t heard yet.  His commands are rough, like they are difficult, but they are certainly clear.  

Here are some things Jesus never said:

-If somebody is unloving or unlovable, don’t waste your time loving them.

– I can’t accept you if you’ve done anything, like, really bad.  You know, like bad bad

– Sin?  No biggie.

– If someone has done something to you that you deem unforgiveable, based on your endless knowledge and wisdom, you totally don’t have to forgive them.  Oh, and you should probably ostricize them.

– If someone is preaching something that sounds out of whack with what I’ve taught you, just go with it.  I change my mind, like, all the time.

– Only help people who deserve it!

– You don’t have to follow my example or obey my commands if you don’t like them or if it’s, like, inconvenient or uncomfortable for you.

– I just want you to be happy!

– Just say the right things and act like you have it together, I’m not all that concerned about the condition of your heart, just walk the walk and talk the talk and no one will know *wink*

– Wealth is awesome and you totally need more stuff.

– Aim to be the best, most-important, and highest-ranking.  Humility is for losers.

– Repentance?  Totes optional.

– People are going to love you once they find out you’re my follower!  But remember, only love the ones that love you. 

– You’re totally better than everyone else.  Please let them know that.

– They will know you are my disciples by how well you can fight on social media, by how bad you can make others feel about themselves, by ignoring marginalized people, by being just as stubborn, abrasive, inflammatory,  and reactionary as everyone else.  Oh, and don’t forget to be touchy and easily offended, that’s how they’ll know you love me!

– Following me is super easy and takes no commitment or sacrifice on your part.  Just do whatever you have time for.

– People who disagree with you politically are stupid and you don’t have to love and/or serve them…because they’re stupid.

Ok, I could go on all day, you get the point.  It sounds so ridiculous, right?  But somehow for me, reading it like this put into stark contrast what He actually said versus what we can justify or convince ourselves is ok in today’s society.  I’m guilty too.  Trust me.  I’m working on that plank, and every day God is softening my heart more and more to people who I would have considered “unworthy” or “undeserving” for whatever arbitrary reasons I had come up with.  I’m not proud of that, but I am proud that God can change, refine, and use even someone as selfish and judgemental as me.  

As I learn more about Jesus through reading the Bible, I find myself increasingly glad and grateful that God is completely constant and unchanging.  I mean, I changed my mind about 40 times today just figuring out what to make for dinner.  I’m wishy washy sometimes and moldable, unfortunately not just by God, but by my surroundings as well.  Thankfully God can see a bigger picture that we just can’t and that’s why it’s so important to realize that God’s purpose for us is much more effective than what we would plan for ourselves because He can see the whole in all of it, even if we never do.  Two of His most amazing qualities, in my opinion, are His ability to be completely constant and His unfailing love for us.  Together that gives us something that we could never, ever, ever get anywhere else in this entire world.  (Sorry Taylor Swift, please don’t sue me for copyright infringement…)

It was pretty fun to think these up, obviously I just took things Jesus did say and turned them around.  But I’m sure I missed some good ones, let me know if you come up with some more!  *Please note, my blog not a place for rudeness or snarkiness (although I am always open to hearing loving correction if I’ve missed the mark) there is a whole internet out there for that.  I still moderate my comments, so please, be respectful, cuz if you’re not, well, I still love you, but your superior intelligence and wit will not be showcased here.*

  











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