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-guard.  I 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 21^st 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.

...I lament

AUGUST 10/14

Lord, I feel like I can barely gasp enough air before I start sinking again.

This is ri-di-cu-lous.  How could so much be so wrong?  We’ve already dealt with difficult trials.  We already dealt with a private pain that threatened the size of our family.  Then when we were pregnant for the first time, we almost lost her halfway through pregnancy to the parvo virus and had to get in utero blood transfusions.  Mark – at not even 30  – had to make a career switch because his wrist, damaged in a work accident and left with arthritis and very limited range of motion after two surgeries, couldn't endure physical work any longer.

The circle of pain widens.  Our dads, within the past couple of years, have dealt with prostate cancer and a major heart attack.  Too many close friends have experienced heavy challenges and horrible tragedy, including the loss of a one-week-old baby.  WHY? 

Why does Mark’s body have to be so broken?  He’s already been through multiple major surgeries – appendix removal, hip bone graft to fix the broken scaphoid bone, a second surgery to further fix the bone that did not heal, a biopsy, and now another surgery (after radiation) and potentially more surgeries down the road?  His "good bad wrist" – as in, the one he was born with that has an arteriovenous (blood vessel) malformation overlying a bowed forearm bone – already causes him arthritis and draws a lot of what's-with-your-wrist questions (people think that's the one he broke).  The back problems have significantly changed his life, stripping him of the ability to do the things he loves: play sports, take his daughters for a mall date, and even lift his sweeties up to embrace them.  As if this isn't enough, he's on very powerful acid reflux meds  – which he might take for life  – to stop the recurring sore throats and potential damage to his esophagus from chronic acid upflow.  Now... the ugly, painful, life-changing C-word?

Why does he have to experience so much pain?  He’s already dealing with arthritic wrists.  The pain from the bulging discs and herniations in his back is not letting up, and between the back pain and pain from the incision – which is STILL infected and extremely painful 4 weeks later – he just can’t get comfortable.  WHY WON’T PAIN MEDS WORK – AT ALL?  The strongest pain med is barely touching the pain, and just makes him feel sick.  Oh, and the antibiotics are also making his stomach turn.

I fear for our future.  All of my initial research wreaked havoc on my emotions because the medical journals indicated that this was a serious cancer – the phrase “poor prognosis” haunted my thoughts.  Will my daughters grow up without a father?  Will I have to raise them solo?  If we do get through the cancer, it will always threaten to return (and even more so in an NF patient since their cells are programmed to divide unnaturally).  Neurofibromatosis is hideous.  Google images is filled with disfiguring tumours and Google searches talk about NF sufferers who deal with countless surgeries and chronic pain.  A lifetime of monitoring existing tumours, watching for new growth, removing problematic ones?  A lifetime of relentless pain – that won’t respond to medication?   The potential of all three of our beautiful, innocent daughters, having to deal with the same? 

I can’t bear it.   I’m drowning. 

I want to stop here.  But I will take my lead from the authors of the painful laments of the Bible.  In those cries, there is a clinging on to the promises and the goodness of God.  And sometimes, there’s even a praise!  Too frustrated and broken to use my own words of praise, I borrow those of the 77^th psalm, starting with the lament:

I cried out to God for help;
    I cried out to God to hear me.
 When I was in distress, I sought the Lord;
   at night I stretched out untiring hands,
    and I would not be comforted.

 I remembered you, God, and I groaned;
    I meditated, and my spirit grew faint.
 You kept my eyes from closing [it is 5:30 and I’ve been up since 2:30];
    I was too troubled to speak.
 I thought about the former days,
    the years of long ago;
 I remembered my songs in the night.
    My heart meditated and my spirit asked:

“Will the Lord reject forever?
    Will he never show his favor again?
Has his unfailing love vanished forever?
    Has his promise failed for all time?

Has God forgotten to be merciful?
    Has he in anger withheld his compassion?”

Then I thought, “To this I will appeal:
    the years when the Most High stretched out his right hand.
I will remember the deeds of the Lord;
    yes, I will remember your miracles of long ago [Aliyah’s miracle, the working out of Mark’s new career...].
   I will consider all your works
    and meditate on all your mighty deeds.”

Your ways, God, are holy.
    What god is as great as our God?
You are the God who performs miracles;
    you display your power among the peoples.

Lord, help me when it’s hard to praise you.

[the storm brews: how we got here]

AUGUST 9/14

This storm is a fierce one.   Cancer used to be a scary side-thought.  Let me explain...

In February, Mark was experiencing back pain that wasn’t relieved by chiropractic work.  When he was in increasing pain in May, we decided to request an MRI, and along with that, we thought we’d better get his gluteal tumour (as in the benign tumour that he’s had for many years in his butt), MRIed – yes, that’s a verb in my vocab – as well.

Mark had both MRI reports rattled off to him over the phone by nurses: the back MRI revealed disc bulges and herniations, and the butt MRI indicated that he had more small tumours around the existing large one, located on the branches of his sciatic nerve. 

What does this mean? 

Little answers were provided.  The back would take time to heal.  Physiotherapy was recommended.   The doctor we were referred to by our family doctor – a general surgeon – explained that Mark’s case was out of her league, and forwarded it to a panel of specialists.  He would likely see an oncologist – but not to worry – there was only a 2% chance of cancer and oncologists are just specialized in tumours – even benign ones.   A specialist would call...sometime.

More tumours?  Why was he getting more tumours?  These questions ignited many Google searches.  I believe it was the first site I click on that referenced a condition that primarily causes benign tumours to grow on nerves anywhere in the body.  Neurofibromatosis – NF for short – is caused by a mutation of the NF1 gene on the 17^th chromosome.  It inactivates a tumour-suppressing gene called neurofibronin.  Its most common clinical feature is multiple “café-au-lait” spots on the skin (Mark has some of these).  There are many other symptoms, as the condition affects multiple body systems, and Mark presented another one of them: a bone deformity (of his lower arm).  I am convinced that neurofibromatosis is responsible for Mark’s physical anomalies.

NF is a genetic condition – this means it can get passed on to offspring.   There is a 50% chance of this occurring.   We don’t see any signs of it in our 3 girls, but symptoms usually arise later.  While we don’t see signs of NF upward in the family tree, 50% of mutations can occur spontaneously anyway.  

My research also alarmed me of cancer: the 2% chance of a benign tumour becoming malignant grew to up to 13% if there was an underlying NF condition.  I spent a good couple of days mostly in tears.  The type of cancer this could be – a malignant peripheral nerve sheath tumour – was a serious cancer.  I won’t quote any statistics. 

Mark couldn’t remember much of what the nurses told him over the phone about the tumour MRI.  Wanting more clarity, we picked up the MRI report from the doctor.  Along with incomprehensible medical jargon (that spurred more Google searches), the last line read, “Is there a family history of neurofibromatosis?”  A confirmation that NF is likely. 

Our family doctor referred us to see a geneticist, but testing takes a lot of time, so we will likely wait at least half a year before NF is confirmed.  The girls will likely also be tested.

(You may wonder why I would go so far as to place neurofibromatosis in the heading of my blog if we don't have a diagnosis - we all know the dangers of self-diagnosis.  All I can say is that I think it's going to be part of this story.  If I'm wrong, awesome.  I would be delighted to look like a fool!)

Though we had an MRI report in hand, we had no other information.  We waited and waited.  We finally got a call from an orthopaedic surgeon in Toronto (he took the case on): Mark would have a biopsy done on July 14 to reveal the nature of the tumour. 

After the biopsy was done at the Sarcoma Center in Toronto, we still had few answers.  The first talk with a doctor wasn’t comforting: the tumour looked "mostly benign," "not obviously malignant", but we would have to wait for the pathology results to know for sure.   But other doctors were practically – no, literally - congratulating us that the tumour was almost certainly benign.

More waiting – for more than 3 weeks – since doctors deserve vacations too.  The orthopaedic surgeon personally called at 5:30 on Wednesday night (Aug.6): it was a neurosarcoma – a type of malignant peripheral nerve sheath tumour.  Mark would start radiation in about 2 weeks followed by surgery.  He assured us that 90% of patients do not have the cancer return or spread.  And while it was cancer, it was stage 1, which means that it is slow-growing and not spreading.  A good prognosis, he explained.

Now, we wait for the radiologist to call.  

...I start a blog

AUGUST 8/14

WHAT?! This can’t be. I’m trained in logic, not linguistics. I don’t have time to maintain a blog – I have three kids 5 and under and I’m returning to a part-time teaching position! I’m not a strong enough Christian: I am a sporadic pray-er and Scripture-reader. I’m too emotional – it’ll just be a downer.

I considered starting a blog first out of practicality: my almost 32-year-old husband has been diagnosed with cancer and I need an efficient way to update a lot of people.  To avoid having to tell the complicated story umpteen times to every caring saint out there, blubbering through tears, I can redirect them to the blog.

But God seems to have more in mind.  I don't believe the purpose of this blog is to tell MY story – it's about telling God's story.

If it will be God’s story, I have to get out of the way. Time for some soul-exposure. I don’t have anything really insightful to say. I’ve been a Christian all my life (some of you considered yourselves “born-again” – I might be considered a “born-into” Christian). God has been good to me, and I have many blessings to count. But my faith-life has been stagnant for some time. Yes, I attend church and even Bible studies regularly, and with earnesty; I’ve been schooled at Christian institutions at all stages of my life – grade school, high school, university; I even teach in a Christian high school. But I could be considered a baby Christian. I don’t know my Bible well. I pray, but not a ton. I try to teach my children about God, but sometimes it sounds cliché.  [I added this next part later; the soul was only partially exposed]  I am far from perfect; you see, I have this genetic, malignant condition called sin.  I yell at my kids.  I use words I shouldn't (which get awkwardly parroted out-of-context by toddlers).  I gossip.  I love stuff – materialism: that's my middle name (yeah, I think about clothing in church).  I could write a page-long confession, but I'll stop here. God has placed it on my heart to expose myself, and I believe that it is only in my transparency that you will clearly see God.

So, with trepidation, with scant time, with a lot of nail-biting and soul-searching, I will follow the blog-writing nudge. Ugh. This will be uncomfortable. It won’t always be grammatically correct. It won’t always be updated. It won’t always be theologically sound. And it won’t always reveal a strong faith – as I’ve indicated, it might be blatantly obvious that this lifetime Christian might still be in need of weaning. And it will be raw. Very raw. This isn’t a grab-a-coffee-and-read-this-to-start-your-day blog (warning!). This story is unfolding.  These are not my reflections after the storm has passed; these are my experiences as the storm rages.

May these words of my mouth and this meditation of my heart be pleasing in your sight, LORD, my Rock and my Redeemer. Psalm 19:14

Here we – as in God and I – go... GULP...

To God be the glory.

A note about my referencing: I will often reference Scripture, songs, or devotionals. Just follow the links to understand the context behind my words.

A note to my dear blood-family and close friends: Please do not be offended that I’m sharing so publicly what I would normally share with you in private. There will be lots to share with you in confidence that will not be found on this blog. But this sharing is sometimes easier – it can be done at a time when I’m ready to share it, it can be done without blubbering through tears, and it can be expressed much more clearly in written form. Don’t hesitate to ask how I am doing even if you think I’ve said it all on the blog – I need you to ask. Thank-you for walking so closely with us on this uncomfortable journey. You are gifts from God. I love you.