The inspiration for my blog theme “When Trials Come” came from a beautiful, modern hymn with the same name by Keith & Kristyn Getty. The lyrics are stunning. Please bless yourself by listening to it – and other tunes – in my “Trial Tunes” playlist below or click HERE to read the lyrics.

two weeks post-surgery...



An update is due – it’s been two (crazy) weeks since surgery!  

Surgery seemed like ages ago!  The surgery went as expected.  The grapefruit-sized tumour (as we guesstimated from the doctor’s hand motions) was removed along with the smaller, grape-sized ones.  About one-third of the gluteus maximus was removed along with it.
 
We spent 4.5 days in the hospital, and then Mark was sent home with a drain in, since that’s what was holding us up.  A nurse came to the house to change his dressings and took the drain out 2 days after we were home.

Recovery has been tough – harder than expected – says Mark.  Pain has been an issue – and no wonder, since the incision is just shy of 12 inches long with 52 staples!  I was shocked at the size of it, but I guess the muscle is that large.  Pain meds have been somewhat effective, but have also had other unpleasant side effects including keeping him awake in spite of exhaustion and making his stomach upset.   He has greatly reduced the pain meds he’s taking to relieve these symptoms.

Mark has been spending two weeks trying to find a comfortable position on the couch in our basement, watching movies.  He’s been able to get up to go to the washroom, but even now, 2 weeks later, being up for even 5 min is painful enough to send him back to the couch.  

We see the doctor on Friday this week (Dec.12) for our first follow-up.  We hope the drive to London isn’t too painful!  We may hear final pathology results at this appointment, but we don’t believe there was any concern about whether or not the cancer was fully removed.

We trust that we’ve been through the worst part of recovery.  We look forward to spending some time as a family when I’m on Christmas break (I'm teaching part-time).  We need it.

Thank-you for the many prayers and kind gestures.  We're in good hands/Hands.

surgery is booked

After a long wait, many prodding phone calls, another MRI, and a telephone interview with a nurse, we finally have a surgery date: Friday, Nov.21 - next week.

We are eager to have surgery behind us.  Removal should be the cure to Mark's cancer. Radiation has prepped the surgery site, inactivating the cancer so that removal will be safe (it was not expected to shrink the tumour but to "reduce the margins"). A skilled surgeon will be excising Mark's right gluteous maximus - the major butt muscle (yes, this is called a buttockectomy). Surgery will take 3 - 4 hours.  No interference with nerves is expected. No implants will be necessary to fill the void (though I offered to donate!). No significant changes in function are expected.

Mark should be able to walk with a cane shortly after surgery. Recovery will take several weeks, and physiotherapy is likely needed to train the other muscles to compensate.  There will be a lot of lying on his stomach (great for the disc bulges!) and side.  

We know that this battle is not our own.  This battle belongs to the Lord. 
We rest in His shadow.  


S



[update: radiation is complete]

Mark endured the last of 25 radiation treatments on Oct.8.  Yes, this is an overdue post, but I promised myself that blogging would not be something that induced guilt!   I am happy to report that it went fairly well.  Mark has only experienced fatigue as a side-effect. Apparently radiation still works for a couple of weeks after treatment.  We were warned that side effects could worsen, but aside from fatigue, he still hasn't experienced other side effects.  We give thanks.

We met with the surgeon one week ago today.  We hoped for a surgery date, but instead got an estimate of the second week of November.  There were no MRIs to check for changes to the tumour since it wasn't expected to shrink.  Radiation was supposed to inactivate the cancer to improve the safety of surgical removal. 

We braced ourselves for hearing about the difficult realities of living without a gluteous maximus, but we heard only encouraging news - he should be able to walk immediately (with a limp), he should be able to play hockey (but not run a 100 metre sprint), he shouldn't need an implant of any sort (but will have a "flat ass"), he shouldn't experience any nerve complications because the main sciatic nerve should remain intact (though some numbness might be experienced from more minor nerve damage).  We can handle this!

We had the surgeon inspect Mark's arm to give us his opinion on it - it was diagnosed as a sort of blood vessel malformation ("AVM" for short) a few years ago.  He believes this to be another type of tumour - called a "plexiform neurofibroma".  This did not come as a surprise; it was suggested at his biopsy in July and when thoroughly researched (that's my forte), it made a lot of sense in the light of neurofibromatosis.  This tumour is not at any higher risk of becoming cancerous because he has cancer elsewhere in his body.  It's actually a different type of tumour altogether.  It's not aesthetically pleasing and causes arthritis and may continue to grow slowly, but  it will just need monitoring and we'll have to make sure it doesn't become more firm or  painful. 

A few more questions knocked off the list.  A couple more to consider.  But we. are. thankful.

As Thanksgiving has come and gone (but the necessity of thanking has not), I've reflected a bit on the biblical command to give thanks:
Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.  (1 Thessalonians 5:16 - 18)
It's easy to think of this command as one similar to a command I often give my children - What do you say?" - after I provide them with something for which they ought to thank me.  I want to train them to be polite.

I don't think this verse (or others like it) is part of a manners lesson. And God certainly doesn't need the thanksgiving.  We do.  We need to thank.  It reminds us of what we have, pulling our focus away from what we don't.  It produces joy.  Thanking is not about God.  I's about us.  He commands it because he desires for us to experience joy.

Ann Voskamp posted the following on her blog: "Being joyful isn't what makes you grateful; being grateful is what makes you joyful."  The practice of thanksgiving produces joy.

And the practice - because it's not always natural and it has to be repeated - of giving thanks will have to continue during our cancer journey if we want to experience joy through the pain.


We. give. thanks.  (it's not always rolling off the tongue!)  For the completion of the radiation leg of the journey, with no hiccups.  For modern medicine.  For the many saints who walk with us - in person, in writing, in action, in prayer.  For the Lord's nearness which is providing peace.


With a grateful (and even often joyful) heart,

Sarah

[update: the battle begins]

The cancer battle began yesterday with radiation treatment in London.  Mark will continue with 5 weeks of treatments, 5 days per week.  I was able to drive him yesterday and today, and his mother and volunteers from our church will continue to transport him when I can’t (I’m teaching part-time).  While he may feel well enough to drive himself, distraction is especially important for him.

Our trips were uneventful, except for the excitement of our little women who were eager to explore “Daddy’s hospital” (they even let Kayla push a button to move the radiation machine today!).  Mark was in and out in 25 min (too bad the drive is triple that – each way!).  He’s feeling fine so far, but we understand that if he will get sick, it likely won’t happen until two weeks into treatments.  We will continue to wait and see. 

The doctors have not been clear about the purpose of radiation (even after being explicitly asked). Surgery is supposed to be the primary treatment plan.  The radiologist explained that they do not expect the tumour to shrink, but it might increase the effectiveness of surgery.  This doesn’t really make sense to us, as the surgeon explained that the entire gluteous maximus will likely be removed.  I’m not sure how radiation can improve those margins!  We pray earnestly that radiation would shrink the tumour so that surgery would be less invasive (however, losing a butt muscle is apparently not too life-altering – maybe some changes in hip extension only...). 

Mark saw an optometrist this week.  We wanted to investigate whether or not he has something called “lisch nodules” – small bumps on the iris that are a clinical feature of NF1.  He had brown specks in his mostly blue iris, which matched the google images of lisch nodules.  The doctor said Mark has remarkable vision, but he does in fact have lisch nodules.  They should not affect eyesight (and obviously are currently not), but we will keep an eye on them (no pun intended).  The optometrist said he has only seen them in about 10 cases, and all have been associated with NF.  This is very strong evidence of NF.  (This is what you do when the health system is sluggish – collect your own evidence!)

We finally have an appointment to see a genetic counselor: Thursday, Sept.18.  We want desperately to connect with an NF doctor to discuss the implications of an underlying NF condition when dealing with cancer.  We want to make sure we are aggressive enough with treatments, as we are dealing with a genetic disposition for the overgrowth of cells.

We are relieved to be in the treatment stage of this journey.  We feel that strength that many Christians have expressed.  God is keeping me strong.  The cynic in me often wondered if that was just a cute Christian mantra that was repeated enough to convince oneself calm.  Now I understand that strength.  There’s no reason to feel this peaceful amidst the chaos of this storm; it's that peace that transcends understanding.  That’s God’s doing.  That’s prayer in practice.  We thank every one of you saints for those murmurs lifted heavenward.  They are carrying us.


XOXO

[an ode to mark: mine for nine]

August 20/14

Dear Mark,

Happy Anniversary!  We’re at nine now, in case you forgot J.  I’ll say what many have said: Where has the time gone?

I was just describing to the girls a couple of days ago how you proposed to me (they were playing with my rings, which I rarely remove – only for hot tub prep J).  I explained that we walked down a beach (not according to your plan, which I now understand would have been hard for you!).   You got quiet.  Then, by the water on the rocks, you got down on one knee, (and I wish I could remember your exact words, but I can’t), professed your love, asked that infamous question, and slipped that infinite circle on my finger. 

If I reverse further, I recall the unlikelihood of our union.  I was so resistant.  I didn’t need a boyfriend in my first year of school.   I wanted to focus on my studies.  I would NOT factor into the get-your-MRS-degree-at-Redeemer statistic.  Nope.  It didn’t matter that you were so friendly, that we had such an ease of conversation, that we had a lot in common (sports and upbringing – solely Christian-educated, even the same church denomination, though your mom was training to be a reverend – were you kidding? – and my dad was more traditional J).   I would remain single for now.

I was so confident that I walked to your dorm to set the story straight.  You had disappeared after finding out – through your match-making messengers J – that I was not interested in you.  I explained that it wasn’t anything you were or weren’t; I just didn’t want to date at that time.  But, I told you, I did miss having you around.  And, if it wasn’t too awkward for you, we could still hang out – as friends.  You seemed okay with that.

God had other plans.  He gave me eyes for you.  No, really.  One week after I pronounced my lack of love for you, you sat across from me on a bus headed for mission in Mississippi.  We’d all – your friends and mine – had decided this would be fun.  I saw you on the bus, and then, as if God had given me a pair of glasses (or contacts), I felt this slight attraction.  That’s ridiculous, I told myself.  I was sure I didn’t like him.  But that trip was a game changer: I watched you sweat to mend a woman’s roof.  I watched you playfully interact with anyone.  I watched you gently care for me.  Something changed in me.  I was confused.

It wasn’t long after that trip that I had to retract my rejection of you and tell you that for some reason, I was now interested in a relationship.  But, let’s make it official after I head home, not because I need permission, but because my parents have no idea who you are!

God seemed to have fun as Match-Maker.  Yeah, we had identical comforters on our dorm beds (weird).  And, when I first visited the KG residence, there was a picture of me on your fridge.  Why is my picture on your fridge?  I had received a scholarship through a program the in-laws-to-be financially supported, so I was featured, along with a few others, on a pamphlet.  She looks like a nice girl, your dad teased.   It was a running joke: this girl in the one-by-one was the one for you.  Maybe there’s wisdom in arranged marriages.

It wasn’t a perfect dating relationship (remember that second year when you were really distracted by your buddies?!) and It hasn’t been a perfect marriage.  We’ve been good at co-existing instead of co-living.  We’ve failed to understand each other (but I think I finally understand your love-languages!).  We’ve had a slow-growing relationship, I think. 

But, it’s been beautiful!  We’ve grown in our understanding of each other and of God.  We’ve only had a few fights, and they were kind of boring.  We have been given the privilege of raising three female souls, the first of whom was extra miraculous.  I could go on and on about our marriage blessings.  I am so thankful for you, my Friend and Flame.

In our first year of marriage – you know, that year when you were working and I was still in teacher’s college – someone asked me to describe you.  It caught me off-guardI answered awkwardly: Um, well, he’s a goof!  He’s really nice.  Yah, he’s great!

I’ve always wished I had said this:

He’s genuine.  He embodies WYSIWYG  what-you-see-is-what-you-get (and it’s handsome!).  He’s very honest (though I’ve had to tug a bit for an explanation of emotions behind the bottling up J).  He’s not a fraud.  The gentleness?  He's always like that.  The patience?  It's pretty consistent.  

He’s friendly.  With everyone.  That was my first impression of him over soup in the cafeteria.  He makes – and keeps – a lot of friends.  He golfs at least annually with Redeemerites (university gents), still hangs out with the “Woodland gang" (the high school where I teach and from which Mark graduated), and has even re-connected with friends from elementary.  He picks up new friends at work and in courses he’s taking.  Seriously – who needs that many friends?! 

He’s faithful.  It may not be obvious, because he doesn’t talk about it a lot (and I was looking for a more blatant version of it before dating), but he is a Christ-follower.  He is consistent in prayer.  He opens his Bible.  He serves on church council – though he’s not entirely confident of the fit (but of course, our church has been blessed by his leadership).  After a 3-year term, he hops into another position.  Even now, with cancer treatment approaching, he is carefully fulfilling (and finishing) his commitments (would you just pass it on?!).  He desires to serve God.

He’s also interested in serving others.  He is a giver.  Yes, when women playfully poke at their husbands’ lack of domestic help, I can’t contribute.  He’s really helpful.  He’ll do the dishes, clean, vacuum, anything really (well, maybe not squash spiders ;) ).    (Don’t get me wrong – he’s very masculine.  He does, after all, domesticate to the tunes of Lincoln Park!).  I forgot a grocery item?  He gets it without a “tisk”.  Even in the quiet of the night, he seems more interested in giving than getting. 

And now that you are a daddy, I would say that you are a loving, doting dad.  Sure, you wanted even just one boy, but wow, you are great with your girls (and you even grew to see the beauty of a set of all-girls!).  Your mall trips with them are endearing.  Even if it’s just to watch them walk around with quarters in hand eager to plunk them into a bubble gum machine and hope for two instead of one – and pink and purple.   Your gentle, girl-geared wrestles are priceless.  You call them your princesses.  You comb through tangles.  You endure a lot of pink and purple and sparkles and frills and jewelry and Disney princesses.  And Frozen songs, sung severely off-key.

No, you're not perfect, and I remind you of that far too often.  But you are perfect for me.  

The first Sunday after your diagnosis, we went to church.  We worshiped with the body of Christ.  Our friends happened to be leading worship, and had your diagnosis in mind while preparing the service.  It was beautiful.  I think there were four songs from my personal “Trial Tunes” playlist that I had on repeat and others referenced Scripture I had taped to our bathroom mirror.  The message was encouraging.  But the first and former pastor of our church – who did NOT know us – referenced our wedding text in his closing blessing.  Only God could have done that.  I love these words from Ephesians 5:2: “and live a life of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God.”  I pray that this is our legacy for our children: that we lived lives of love – love for each other, love for them, love for others, love for the Lord.

Mark, it rained on our wedding day.  We were disappointed.  But that photo – the one with us huddled under an umbrella – is one I think I will grow to cherish.  It signifies I DO: in sunshine and in rain.  For better or for worse.  In sickness and in health. 

Huddled with you, beneath a divine umbrella, in His shadow, under His wing,

Sarah   XOXO

...I am refined

AUGUST 17/14

Refine.  That’s a word that’s been invading my thoughts lately.  Only 24 hours after we received the cancer news, a trio of Christ-followers, a church friend and two church elders, came to pray with us (yes, there are saints who do this!).  During our time of sharing, our friend mentioned that she had received an e-devotional that she thought about forwarding to us, but didn’t because she wasn’t sure how it would be received.  I asked her what it was about.  Refining, she said.  Oh, please send it to me.  That word has been on my heart a lot lately.  The devotional gave me a beautiful image of God, the Refiner. It is a reflection on Malachi 3:3: "He will sit as a refiner and purifier of silver." (NIV)

Here’s the gist of it (but feel free to read it HERE, even if you aren’t a “girlfriend of God" J):

The silversmith sees something in a piece of silver – that already appears beautiful – that most cannot see.  To bring out its beauty, he must place the silver in the centre of the fire, where it is hottest, in order to fully burn off all the impurities.  He doesn’t walk away from his project: he must keep a close eye on it because if he leaves the silver in the flames even a moment too long, it will be destroyed.  How does he know it’s done?  When he can see his image reflected in the silver. 

What a stunning image! 

I’m still processing what this really means (and will continue to process as this trial continues), but this is what I understand so far:  God is not allowing this to happen because we’ve done something wrong; in fact, He sees beauty already.  But He allows this massive trial because He LOVES us.  He wants to perfect us – fine-tune us – to make us more like Him. 

Maybe I should feel privileged? 

When I wrote my lament (which could have better reflected my pain if I were more linguistically endowed), I wanted to begin with, WHAT THE HELL IS GOING ON?  I didn’t want my parents to cringe (they’re so much more controlled!), so I softened it.  Our pain is certainly a product of hell – God never intended for us to experience any of this.  But sin, the joy-sucker, entered our lives.  We brought it on ourselves (and we’d love to think we would have done something differently than our idiot ancestors Adam & Eve, but we would have sunk our teeth into that apple just as quickly).  And now we live in a world that is shattered.  Souls suffer.  Pain penetrates.  Graves gulp.  From the moment we breathe in air, it starts being sucked from us.  Yes, in a sense, there’s some hell going on here. 

But I wonder if I’m just seeing it all wrong.  Maybe I’m mistaking the heat of the kiln for the heat of hell.   Oh yes, I’m experiencing the products of hell: sickness, pain, death-threats (the harrowing cannnccccerrrr), but this is not hell.  Hell is an absence of God.  God isn’t MIA – missing-in-action.  He’s MIA – Maker-in-action.  He’s got his eyes locked on me in these flames.  And He’ll pull me out – not a second too late – when I’m glowing with His glory.

Oh my God, what a message!  Refiner, fine-tuner of my faith, DON’T LET ME OUT OF YOUR SIGHT.  As I feel the temperature rising, I want to wriggle out of this.  Help me surrender, so that I can experience more fully your love, and exit this trial glowing with Your glory.  Amen.    

Note: Keith & Kristyn Getty refer to refining in their lyrics for When Trials Come:
When trials come no longer fear
For in the pain our God draws near
To fire a faith worth more than gold
And there His faithfulness is told

...God whispers Words

AUGUST 11/14

Ok, I’ve said I don’t know my Bible very well.  Sure, I’m familiar with a lot of stories and passages I’ve heard over the years of Christian training.  But what I mean is, I haven’t memorized Scripture or studied it enough to make the particular words permanently stick.   Scripture verses don’t flow off my tongue in prayer or conversation.

God whispered Words in the darkness.  What do I mean?  I didn’t hear anything, but God spoke to me in a cerebral dropping, if you will: a phrase popped in my head.  They weren’t just any words, but ancient “Words” – Scripture.  On Sunday morning (Aug.10), I laid awake after my youngest woke me up and demanded a bottle.  It was 4:30.  I was exhausted, but couldn’t sleep, so I thought and I prayed.  Then came the Words: “God will make everything beautiful in its time.”  I had to rehearse these Words a few times so I wouldn’t forget them – they were familiar, but I had no idea what book of the Bible they were even from.  In the morning, I had to use Google (the 21st century concordance!) to locate the words.  Right.  They came from the “there-is-a-time-for-everything” passage in Ecclesiastes 3.  I found a devotional by Rick Warren that explained that God would take this ugly mess and make something good – even beautiful – in His time, if we give Him the pieces (Thanks, Rick).  That has given me a peace that passes understanding.

God also whispered Words in the light of day (though I suppose figuratively, it was still dark).  The next day, I was pondering about faith – what it really meant, how it plays into miracles (because we need one!), if I have enough of it to see a miracle.   The second verse came to me incompletely in a daylight whisper (or cerebral dropping!): author and perfecter of faith.”  Again, Biblically illiterate as I am, I had to look it up. This comes from Hebrews 12:2:
“Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.”
What a goodie!  I need to fix my eyes on Jesus, not on the crashing waves and howling wind and roaring thunder.  He is the author of faith – faith is a GIFT, not something we achieve by holy habits or good deeds.  We don’t deserve it, but receive it because of that act of enduring the cross.  He is the perfecter of faith – He works in us to help us with the believing-but-not-seeing.  He takes the lack of faith that we have and produces even greater faith. 

Another verse was brought to my attention through a cousin’s Facebook post (thanks, Dani):
"Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there,' and it will move. Nothing will be impossible for you." Matthew 17:20.
Do I have enough faith to move a mountain?  I’m full of fear.  Is that a lack of faith?

I don’t know if this would stand theological scrutiny, but I believe God wanted me to pair this verse with the Hebrews one.  Maybe this is the answer to my do-I-have-enough-faith question: It doesn’t matter.  Remember that Jesus, that cross-conqueror and death-defyer?  Remember how He sat down at God’s right hand?  He’s close enough to mediate for me.   If I pray through Him, He takes my imperfect, fear-filled, mustard-seed-like faith, and perfects if through His sacrifice, so that my Faith can move MOUNTAINS (and oh, this is a mountain).   It doesn’t matter how much faith I have: my prayer receives power because Jesus intercedes on my behalf.  

Awesome message, Lord.  I couldn’t have come up with that one on my own.  I might have just cracked a smile.

Thank-you, Lord, for the Oxygen.