God knows best

Summer has been quiet at the Thul household.  At least the majority of it - if you start counting after July 4th.  The past month has been pretty good, a welcome reprieve from suffering.  A vacation from days spent mulling over big questions with no obvious answers.  It's been good to step back from intellectual debate and just experience summer with kids in hand and God shining through brightly from above.  This past week has been a bit of a step backward.  It's always a decision whether to blog about the bad.  But that's what this blog is about.  It's a journal of pain and how we survive it.  A journal of brokenness and what heals us.  So, while it is a delight to celebrate when things are going well, it is also a duty to speak when struck dumb by sorrow.

Amelia has had many more seizure free days since we started her on Depakote in July.  She averages 20 seizure free days per month, with a long stretch of 30 days with only 1 seizure in July and August.  However, she seems to cluster seizures for about 1 week out of every month.  This past week was her cluster week.  She was seizing once or twice a day (tonic-clonic or grand mal) and spending large amounts of time either recovering from seizures or experiencing partial seizure activity (it is hard even for us trained nurses to tell the difference).  The doctor decided to increase her Depakote once more, and then we will be talking about an admission to the epilepsy monitoring unit at Mayo if things do not improve further.  This is hard for Aaron and I on a couple of levels:

1. Increasing the Depakote increases Amelia's drowsiness, a side effect of the drug.  It is hard to see her zoned out at times when she would normally be vibrant and engaged.  It is hard to lose even more of what we thank God we haven't lost of her spirit.
2. She will be admitted around the beginning of October if things go poorly.  That will be the one year mark since she came down with encephalitis, and her 4th birthday.  To be a year away from the initial illness...and still ill, still needing to be in the hospital, household and family still in uproar...it is hard to contemplate.
3. We are nearing the end of the line where drugs are concerned.  We are starting to talk about options like surgery.  We earnestly beg God that medications work and we can avoid any more invasive treatment.  (and, just for the record, we won't consent to surgery until Amelia is old enough to decide for herself or her seizures become more life-threatening)

For the moment, we can only try life-style changes and natural treatments to augment the moderate control the medications offer.  And that brings me to the awkward moment in all of this.  We have found a few things that drastically affect Amelia's seizures and all the other side effects the seizing has on her life and ability to function.  The biggest issue we've faced in this battle is that of appetite, vomiting, and the lack of growth that has stemmed from the poor nutrition.  If you've seen Amelia in person since her illness last October, you might have noticed that she's much more pale and thin than she used to be, and hasn't grown much in height since (she has grown maybe 1 centimeter in height since last October, and has continued to lose weight...about a quarter kilo a month).  In the last few months, we've found a few surprising at-home strategies to combat this problem.

The first is perhaps the most obvious...yet we missed it for so long.  During post-seizure recovery and partial seizure activity, Amy has a hard time chewing and swallowing, and frequently vomits because of her lack of coordination that affects her swallowing ability.  About a month ago, we started using our baby food grinder...the Happy Baby Food Grinder, vintage 1979, passed down through my family and finally to me.  Grinding her food...especially at supper time, when the stress of the day builds up and she is more prone to seizure activity...has about doubled her food intake, and cut down on the vomiting episodes during mealtimes. I would highly recommend grinding, pureeing, or purchasing ready-made baby food to other parents facing the same problem.  Amelia is one of those rare cases where she appears high functioning, but in reality experiences drastic deficits in her motor skills, coordination, and reflexes that are transient.  The transient nature of her deficits in turn makes it difficult to determine how to treat her at any given moment...like the average almost-4-year-old she is chronologically, or the infant she can sometimes morph into due to seizure activity.

Infancy.  I remember Amy's chubby infant days so frequently and with such longing.  Fecund with possibility.  She weaned herself at just before 12 months, a few months before Caleb was born, and long before I expected her to.  I have always regretted her weaning so early - years before my other two girls weaned themselves shortly before age 4.  I felt it was my fault, because I know I pushed her away and put her off many times because of pregnancy-related tenderness, and my own busyness with school and planning for a new baby.  When I got pregnant unexpectedly post-tubal last fall, I immediately longed to nurse that baby because I felt like it might help me heal the wounds from Amelia's early weaning and the cancer-induced weaning of Caleb at 7 months of age.  Then the baby died, and I wondered what God could possibly be doing.

In April, my milk started coming in for that baby.  I had a breast biopsy because the milk leaking seems so odd.  Most women...even those who've nursed multiple babies...don't apparently get milk for a baby they've miscarried, at least according to Western medicine.  A few months later, the reason for that milk suddenly became obvious as Amelia started asking (always during or just after a seizure) about nursing.  Wondering how old was too old to nurse.  Wondering if children her age ever started again.  I knew immediately that it was just a matter of time before she asked to nurse.  I talked it over with Aaron, my mom, a friend, and prayed about it.  And decided there was absolutely no reason not to do it.  Sure enough, she asked.  And I said yes.

To tell the truth, I thought she would have forgotten how.  I also thought she might bite me.  But she didn't.  She latched on as if she had been doing it all along, and from that day, in the end of July, she has nursed several times a day, always either during or just after a seizure.  Most people today are aware of the nutritional benefits of breast milk, and it's unique properties that aid in motor development, brain formation, immune function, and protection later in life from allergies, cancer, diabetes and other diseases.  In Amelia's case, breastfeeding seems to have re-stimulated her appetite, restored her ability to "come out" of long seizures, and improved her mood and ability to interact with others.  She has grown 1 inch since July 30, after growing 1 centimeter for the preceding year.  My milk has come in abundantly, which leaves me with the conundrum of potentially having to dry up a milk supply again in November for my next cancer scan (luckily, with the help of a great lactation consultant at Luther and La Leche League friends, I found this can be easily and painlessly done by drinking copious amounts of sage tea for 1 week).

This has become somewhat of a "secret", because I did not want to go through the social awkwardness of re-lactating for a toddler if Amelia wasn't going to take to it.  As it turns out, nursing is the perfect thing for her and I at this point, and now I am ready to tell others about it.  I am fairly confident she will continue to nurse for as long as I can do it.  Amy is pretty sensitive to the opinions of others, so I would ask that, if you have questions about this process or want to talk with me about it, please do so when she is not listening.  I don't want to discourage this perfectly natural nursing relationship in any way.  Her neurologist is on board and thrilled, calling breast milk "the perfect food for the brain-injured child" and encouraging me to consider pumping breast milk or accepting donated breast milk for Amy to drink from a cup if I should decide I no longer want to physically nurse her.  He was very concerned that he might have to put Amy on an appetite stimulant, which could be dangerous for her brain healing.  He is thrilled that she is gaining weight and inches, and seems to be making some neurological gains as well.

Lastly, this new nursing relationship has been incredibly healing for my spirit.  Mostly because there is something tangible I can do to help Amy through her toughest moments.  And that "something" is the love literally pouring out as we snuggle and nurse.  She is so content during these times, it is as though I have regained something I feared I may have lost forever.

Particles of sacrifice reveal untold beauty

Northern lights in the middle of the sky above rural Wisconsin

on August 3, 2010; visible due to an explosion on the sun's surface.

A storm opens our eyes to see, our hands to receive the starry nights that follow.  An explosion - damaging, fire-gushing, volcanic, erupting - on the sun's surface sent billions of particles toward earth.  (A damaging, painful explosion of God's wrath above the Cross snuffed the life out of the Son of God.)  As the particles of that great light-filled body in the heavens float through the galaxies down to Earth's atmosphere, the northern lights become visible all the way down to parts of New England where they are never seen.  (So grace fell like a million drops of the Son's light on my soul, revealing hidden beauty beneath the scars of sin as His light reflected there in my black heart for the very first time, and every time since, when I confess.)

The storms of the spring and summer where suddenly eclipsed today in a dark doctor's office that has held nothing but sorrow for me since March, 2008.  Storms eclipsed, for once, not by more storms - but with a heaping pile of good news!  He took my neck in his hands, and felt no tumor where there has been one since November of 2008.  He looked at my lab work, and discovered that, for the first time since cancer struck back then, my body is fighting back.  I have lost weight, almost miraculously and effortlessly, on my no sugar/no starch/no alcohol/no over-the-counter meds diet.  That is why my thyroid hormones are out of whack - I need less medicine than I did before, because my liver is functioning at 100% and I have gotten a bit smaller.  (Less medicine is, at least in my case, a very good thing!)  My tumor markers are slightly more elevated, but that is probably because my own immune system attacked a tumor in one of my lymph nodes, one in a very inoperable location, and exploded it into a million tiny pieces that now float in my bloodstreams, innocuous because of the new antibodies my body is making.

And so I dance (a quick jig before getting back to work on my exam) and thank God for good news on an otherwise ordinary Wednesday.  For lighting the night sky with green and red, for sending dancing light last night as a harbinger of dancing feet today.  For helping me find better health, for using better health to trounce cancer, at least for the moment.  For keeping me with my family until my next scan, which won't be until October or November now!  God is great!  That is all.

Click on the little images to see bigger ones - the lights are faint,

but they are there!

Going forth

Prayers today as I go fight for treatment for Amelia. Please see my prayer request list from yesterday afternoon here. I am praying for the quickest and easiest solution to be made possible.

Another day away

Come, let us return to the Lord;
for he has torn us, that he may heal us;
he has struck down, and he will bind us up.
After two days he will revive us;
on the third day he will raise us up,
that we may live before him.
Let us know;
Let us press on to know the Lord;
his going out is sure as the dawn;
he will come to us as the showers,
as the spring rains that water the earth.
~Hosea 6:1-3~

Tonight I am lonely and tired, and wish I were home in bed with my husband. The side effects took full effect today: sores in my mouth and throat and the rest of my digestive tract, nausea, a little vomiting, muscle soreness, extreme fatigue, and general feeling of being low. Low energy, low mood. Waiting rather anxiously for the results of my scan tomorrow (although be forewarned, I will just be guessing as I won't get the doctor's impression until Monday, December 28). Hoping there is no uptake and I can go home Monday morning!

Confession

We have believed, and yet you have helped our unbelief. I confess at times I have accused You of sleeping in the boat while the wind and the waves raged around us, but I know deep in my heart that You do not slumber or sleep. You have been ever watchful, ever mindful, and ever good. Thank You, Father, for keeping us in faith.

~ from a father's Prayer for the Last Day of Chemotherapy for his young son

Here I sit, a cab drive away from the hospital, safe in a warm, dry Wi-Fi hotspot. Procrastinating. I should be hustling to write a paper that is overdue for the class I took an incomplete in this past semester. But cancer crowds out all productive, academic thought. Cancer brings you to your knees, in your heart. Makes you face your mortality. Makes you confront the idea that you really cannot take care of anything, you can make no promises, you can persevere through nothing. Your endurance, strength, pride, will-power: all diminished to a meaningless, futile and hostile flurry in your breast, the ill-begotten striving of a powerless, prideful creature who has no say in the whirl of the universe that surrounds and encompasses. This cancer that grows within is a force with which I cannot reckon. It could rob me of my most priceless years, watching these children grow, shepherding their hearts and healing their hurts. Yet what it robs from me is pride. It forces me to realize that it is God who fills them, shepherds them, heals them. Not I. It forces me to realize that perhaps God has more for me to do from heaven than he ever intended me to do on earth.

So I bow, internally, in this crowded beehive of humanity, maintaining my 3-foot distance. Protecting people from the poison that boils up and exudes from me this day. Pray. Confess. That I, too, have accused Him of sleeping in the boat while the wind and waves rage about us. I understand, deeper today as ever when I am cloistered for these scans, that He may be silent; He may be invisible; He may not answer yes. But He is here, for He has promised (He who can promise) I will never leave you, nor forsake you. (Joshua 1:5)

One last fling

Cancer is really cool in one, specific way: it slows time, crystallizing life in the still frames, making each moment sweeter and more precious. When life is good, life is really, really good. It's that old dog, Perspective, barking at my door. One last day to soak up my kids, one last day to make everything count. One last day to make memories. It always feels like it could be the last day of your life, as you pack your bags and their bags so that you can be apart for a week just before Christmas. It brings home the reality that you've been ignoring for the past three months: But of that day and that hour knoweth no man, no, not the angels which are in heaven, neither the Son, but the Father. (Mark 13:32)

Rosenmunnar: an old Swedish recipe that has only three ingredients: 1 cup butter, 1/2 cup sugar, creamed together; add 2 cups of flour, just mix. Form in little balls of buttery happiness.

Get the kids in on the fun:
have them put a thumbprint in each cookie, right in the center. Fill their thumbprints with your favorite preserves (ours is boysenberry for these cookies). Bake at 375 degrees for 10-15 minutes or until just golden brown around the edges.

Try to take a rest on the couch while the cookies are baking.
If you have kids around, they will most likely see this as:
A) a great opportunity to cuddle,
or
B) a great opportunity to wrestle.

Once the cookies are cooling on racks, head outside to eat some snow. Makes any cookie taste sweeter. If you can't get the sleds to slide on the ice-crystals formed by the below zero weather, why not just roll down the hill for a while?

Serve up some hot cocoa in fine china to go with your cookies.

Top with some perfect dimples in icy red cheeks.

Glory in the morning sun and the effusive beauty of baby skin.

Enjoy the fruits of your labor: seconda's smile...

...stories on the couch...

...and a head-banging piano lesson from best friends.

In other, random things I've enjoyed today, the music of Pomplamoose matches my mood this season.

Tomorrow is my last morning with my kids for the week. Then off to all those things I haven't done since March: coffee alone with a friend, lunch at another friend's home, bowling, a party with Aaron's co-workers, nights alone, sleeping on my stomach and staying up till all hours and sleeping in. Pray me luck!

Away

As many of you know, I am spending this week, and probably next, undergoing extensive outpatient testing to determine the cause of my fainting episodes. I am down at Mayo-St. Mary's Hospital, with the consequent pleasure of spending my evenings and nights at Hawk Ridge Stables in Pepin (a.k.a. oldest and dearest friends home on a ridge in the Pepin bluffs, surrounded by horses and God's greenery). Thereby somewhat cut off from the internet, I went ahead and posted photos ahead of time so there is something new to see on these pages for those who faithfully read. I will make every attempt to post the status of my testing as things occur this week and next.

A 2nd round of fog

"He can practice the discipline of unshakable faith as he dances in step to a melody that is currently out of earshot, or he can close his ears to the possibility of ever hearing the music." (Carol Kent, When I Lay My Isaac Down)

Twelve hours away from home. Exhaustion hovers over me like a loose shroud, the molecules of my mind pounding like surf one against another, in constant motion as if to escape the inevitable reality that must hit. This day brought back recollections of the Indian summer, beetle-buzzing afternoon nap I unexpectedly took. My late November gift from God. My dose of radioactive I-131 didn't come on the morning shipment and I received a phone call just before leaving my children: "Don't come for a few hours." So we fiddled around town with Grandma Debra until 4 p.m., treating ourselves to a few things at an unfamiliar store, hugging the baby. Holding hands with my girls as we meandered down aisles.

We can hug our hurts and make a shrine out of our sorrows or we can offer them to God as a sacrifice of praise. The choice is ours. (Richard Exley)

Back to the clinic. A dozen hugs, a few tears. After days of sobbing at bedtime, I was expecting drama from all sides when I left today. None. Just a prolonged, rather joyful goodbye. Processing done ahead of time in Mama's arms, I suspect. I walked through the doors, feeling as if doing so began a 15-minute metamorphosis from living human heart to petrified wood beating coarsely in my chest. Rocky. Wooden. Unresponsive. Frozen in time, waiting for reality to become unhinged or unsuspended, one of the two. Followed the nurse back. Spoke with the nuclear medicine doctor. Swallowed Alice's little blue pill once more. Fell back down a (more familiar, this time) rabbit hole.

The kind of faith God values seems to develop best when everything fuzzes over, when God stays silent, when the fog rolls in. (Philip Yancey)

Back in my car. No sense of taste, except a brief metallic burn. Two boils sprang up on the tip of my tongue within a half hour. At first I wondered if I was imagining things. Smell gone. Eyesight magically, and immediately, changed. The world is sterile again, like a desaturated photo. I never knew how much I smelled until most of my senses left me like chaff in the breeze. The end of a gray day: laughter with family, crude jokes, a meal with lots of nice textures (and no iodine).

Now the real waiting begins. What does Thursday hold? Distant spread of cancer? A little left, another treatment needed? Or those golden words: "clean scan" - a get-out-of-jail early token, and off I go, home by Sunday. Prayers, please!

Committing the truth through omission

Wrapping gifts for my children. 19 gifts. 4 children. Lots of wrapping. I wrote out the tags in advance for each child, swollen fingers dull to the task. My penmanship is clubbed, blocky. On day +17, the tag for my baby boy reads: "To Cal. Love Mama." No comma. Not "Love from Mama", which is what I *meant* to say. But - "please love me"! Which is the desperate cry of my heart.

Have you ever wounded your baby? Looked deep in their eyes and known that your tone, or your brusque brushing off of their need for you at that moment, or your delay in picking them up to snuggle has just wounded them? Have you heard the bricks of that bridge of trust crashing into the river of their soul? Ever wondered if the bridge will ever be rebuilt, or if a moment of opportunity is lost forever in a sea of wounds they will suffer at the hands of those they love for their 80 mortal years?

I fear that. I know that look, in small ways, from the myriad ways I hurt my children - with and without meaning to - on a daily basis. What I fear now is that my relationship with this tender shoot of young boyhood will be forever changed - even perhaps maimed - by our separation. That closeness will never be regained. That I will come home to a son who does not wish to cling to my shirt necks and stroke my neck skin, bury his hand in the fold between shoulder and chin as we sleep. Please don't reassure me. I know it is entirely possible that he won't hardly notice I'm gone. But the fear whispering around the edges of each task of my day is that he will notice.

That he'll notice forever.

Lord, protect my baby boy. Protect my heart as I leave him. Please let us love in a way deeper and stronger than we do now. That absence will indeed make the heart grow fonder. Don't let this cancer grow like the noxious weed it can be. Don't let it seep in between him and I. I can't bear the pain. I love him. I love you. Amen.

Schedule for scan/treatment #2

Here is what I know about my upcoming cancer scan and possible treatment:

Monday, March 23, 2 p.m. Scan dose (7 millicuries) of I-131
Wednesday, March 25, 2 p.m. Uptake scan (1 hour)
Thursday, March 26 Appointment to determine scan results
Friday, March 27 Treatment (100 millicuries) if necessary
March 27-30 Total isolation if treatment
Saturday, March 28 Home if no treatment necessary
Friday, April 10 Home if treatment is necessary

Another kind of pearl

It is the million little things God does for me along the way that whisper of a love and tenderness too deep and precious for me to comprehend. Our friendship, this love between Creator and creation, is not a single moment of epiphany, but a long string of small pearls that I save and treasure. Woven on the strand of my ordinary days.

"Friendship isn't a big thing - it's a million little things."


I remember the day my aunt found the first tiny sharp edge, like a grain of rice, budding out of Katrina's gums. It is a visceral memory, one of those that wrenches you to the delightful yet jarring realization that your baby won't stay a baby for very long. For a week now, that very same tooth has been wiggled and waggled. I prayed all week that it would fall out before I leave for my scan. It is one of the hardest parts of these leave-takings - the fear that I will miss something big, a first something. Today, after I persuaded Katy to let me tie a string around the tooth so she could wiggle and waggle more effectively, the tooth fell out, painlessly and anticlimactically. And I praised God once again for small, tender mercies as I walk this stony path.

Your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

How precious to me are your thoughts, O God!
How vast is the sum of them!

Were I to count them,
they would outnumber the grains of sand.
When I awake,
I am still with you.

~ Psalm 139:16-18

The road so far

I've been walking the cancer road for 9 months now. The time it would take to grow a healthy baby in my womb. Along the way, I've begun to recognize a peculiar ebb and flow: tension and anxiety, followed by a season of peace and tranquility and yet ravenous consumption of every minute blessing in my life unlike seasons that have ever gone before.
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Diagnosis: stress and heartache, fear. I felt like I was standing in front of a full-length mirror for the first time in a decade. Scrutinizing myself, and particularly my soul. Unprepared for what I saw in my reflection, but gritting my teeth and examining it nonetheless.

After surgery: descending into a new reality. Coming to grips with a different life and molding new expectations. Turning my back on the past and embracing the future, it's myriad delights and sorrows. Feeling the gut-wrenching bitter and the mouth-tingling sweet that is watching a life fly by in a series of moments I wish I could bottle up and live in forever. Thinking about tomorrow...but yet never thinking about 3 months from now. I packed my full-length mirror away.

Treatment: My hands pierced the icy water of the deep end of this pool of suffering as I cleaved the water's surface, a fearless and determined dart of humanity diving head first and headlong into whatever lies below the surface. I kicked my legs furiously and reached the bottom. I laid there, in the deep, feeling the burn of my lungs echoing the cry of my heart. Memorizing the grains of gravel that etched my back and scarred me forever.

Home again: in a bubble of release, the pressure in my chest just shy of explosion, my face broke the surface, following my hands as I emerged from the dark deep to feel the sun on my face again. Delight, awe, gratitude, rediscovery, regrowth. I didn't look below the surface for a long time. I reveled in denial. I put on optimism like a familiar cloak, not even pausing to examine it's threads.

Next scan: I stood on the diving board for long moments as the clock ticked audibly beside me. I knew the depths. I remember the gravel in the bottom. I remember the darkness. I don't want to return. I walk away, and revel in denial for a few more days.
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Preparations unmade, days uncharted. It stretches before me like the abyss it is...parts of it known, previously discovered; yet it's length and breadth unknowable. I teeter on the edge and plan about planning. But the details elude me. I revel instead in companions, friends, family, sights, sounds, smells, experiences. Real life, not details of a life yet to be lived. I don't want to live it. It's almost as if I believe that it won't come to pass if I don't turn to face it.

So this week, I turn to face it. I consider what I must lose; I problem-solve so that I lose least, and gain something. (Anyone who does not take his cross and follow me is not worthy of me. Whoever finds his life will lose it, and whoever loses his life for my sake will find it. ~Matt. 10:38-39) I go on the strict diet, I make all the logistical plans, I cook ahead for my family, I wrap gifts for each of the 19 days I may be gone this time around, for each child. In every act of preparation, I have that old familiar choice: to grit my teeth and survive; or to find a way to cherish and believe and grow because of the pain I am facing, knowing.

This verse has played in my head all day: From the fullness of his grace we have all received one blessing after another. (John 1:16)

And this song, which has become an anthem for this season in my life:

Evermore my heart, my heart will say
Above all, I live for Your glory
Even if my world falls I will say
Above all, I live for Your glory
~ Hillsong, Evermore

Sprinkles

Therefore, brothers, since we have confidence to enter the Most Holy Place by the blood of Jesus, by a new and living way opened for us through the curtain, that is, his body, and since we have a great priest over the house of God, let us draw near to God with a sincere heart in full assurance of faith, having our hearts sprinkled to cleanse us from a guilty conscience and having our bodies washed with pure water. Let us hold unswervingly to the hope we profess, for he who promised is faithful.
Hebrews 10:19-23

A little sprinkle is all it takes to transform something familiar into something fabulous. I took these photos a week ago, at Rosy's 4th birthday party. Sprinkles in pink abounded on her much-longed-for "ballerina" cake (we still haven't said the other "B" word so many know this cake by). This section from Hebrews came to mind...just a little sprinkle of the blood of the Lamb and all is changed. What was familiar (sin) has become fabulous (glorified purity).

Tonight another example crept up on me. Just a sprinkle of the familiar (sin: anger over lost competition) embittered the whole fabulous night (a date with my husband). Yet one "sprinkle" of prayer and Christ turned the night on it's head once more - reconciled, nay, reveling in my husband once again, our wounds healed and anger erased.

These intervening days of trust and tranquility are winding to a close. March is coming closer...my 30th birthday, my next cancer treatment. How my heart swells and overflows at those precious words, Let us hold unswervingly to the hope we profess, for he who promised is faithful. A little sprinkle of unswerving is exactly what I need tonight. Hope, for He is faithful. Sprinkle me with sleep now, Father...carry my burdens again while I rest.

Seaglass

"The biblical call to repentance and faith is nothing if not a call to rediscover who we really are, made in God's image, designed to glorify him. But the Bible doesn't just focus on this underlying intrinsic (and quite slippery) sense of self, many of the biblical writers also engage in identity construction; for example Peter in his first epistle takes time to lay out the identity of those he writes to before giving moral instruction hinging on 2:11 'Dear friends, I urge you as aliens and strangers in the world, to abstain from sinful desires, which wage war against your soul.'

For Peter identity is a conscious and deliberate basis for behaviour, and perhaps our Christian faith enables precisely that; open eyes to percieve our real nature and freedom from sin to shape ourselves and our world accordingly." Anna blogs at Something

These irregular ovals with worn corners have sat on my windowsill since my honeymoon, collected in $1 glass containers found in a shop on Orcas Island. Of what value were those hours spent combing beaches for golds, and grays, and blues, and yellows? Green and white seaglass is easy to come by anywhere waves crash and tides flow. But those unique colors...the rare ones, tossed up reluctantly from the sea where they were so seldom cast. Aaron and I, bent at the waist, walking away from each other and silent. Those hours were as golden as the rounded shards we stooped to cherish. Hours of graceful silence, unfettered peace, acquaintance between souls.

Conscious and deliberate. Constructing an identity for a lifetime of oneness. For us, what is important was old, of little monetary value, even of questionable beauty to many. Pieces of glass cast from the sea, worn by the passage of time and the pounding of surf, without even a glisten left to call it's own. These three jars are the similitude of what we envisioned for life.

And here is cancer, and treatments, and separation. I yearn for those early days of hunting seaglass out of Puget Sound, finding agates on the lonely beaches of Lake Superior, or stooping to scoop rocks out of rivers in Vermont. The passage of time is still a source of heartache for me. Yet how much comfort I take from that early identity we wrought in our marriage: for now I am that seaglass, a sharp piece dulled by the tossing of life's waves, and cloudy after the tumult. I don't have the same sparkle I had then, but I am at peace knowing that glimmer was never what caught my beloved's eye. I won't be thrown back into the sea because of my wear.

Grasping grace

...to humble and to test you so that in the end it might go well with you...Deuteronomy 8:16 (exc.)

I heard this verse quoted on the children's Bible hour we listen to on the radio on the way home from our small group meeting. It really struck me that being humbled and tested by cancer is an opportunity for obedience and submission that will result in good things for my family and I. As I read verses to the kids, and talk with them about our upcoming separation for my next scan/treatment, it shocks me how clearly they see the love of God in this difficult situation. God has provided doctors, and treatments; He watches over me so I can come home to them again. I admire their attitude and grasp on His grace. I want to absorb it, emulate it.

On a lighter note, a couple of gratuitous pics for the day...of the Moroccan dark chocolate bon-bons and traditional honey and almond pastries I made from scratch today. These will be served at the Valentine's Dinner & a Movie event I am cooking & baking for on Saturday. Trust me, you want these recipes! Click on the links to go to them!

It's official...

I am having another scan in the end of March. Prayers answered: the dates will dodge Caleb's 1st birthday, my 30th, and Rosalie's 4th. SOOO happy to celebrate with them instead of being in isolation! Prayers still to be answered with a yes or a no: how I will tolerate the hypothyroid period - will I have energy to keep up with the kids, school, and the charity dinner I am helping sponsor next week? How will the scan go - please, God, no metastatic disease. Will I need another treatment? Will the next scan be a 5 day separation from my children, or a 17-18 day separation?

Here's the schedule...

• Immediately - stop thyroid hormone replacement
• March 5 (4 days after my 30th) - stop Cytomel, other replacement hormone
• March 19 - labs (this will shed a lot of light on metastasis; also pray insurance will approve the shipment of my thyroglobulin test back to the University of Chicago)
• March 23 - take I-131 radioactive iodine 7 millicuries for whole body scan
• March 25 - whole body scan
• March 26 - appointment with Dr. Bingham - determine whether ablation is necessary
• March 27 - either go home or get treatment dose
• April 10 - home if I need an ablation (treatment)

Please lift us up in prayer. We are sinking under the latest news.

The unexpected

God is our Refuge and Strength [mighty and impenetrable to temptation], a very present and well-proved help in trouble. Therefore we will not fear, though the earth should change and though the mountains be shaken into the midst of the seas. ~ Psalm 146:1-2 (Amp)

Never a good idea to go to an oncologist expecting nothing. Usually the perennial pessimist, I lean toward the 'expect the worst, hope for the best' end of the spectrum. Today, feeling so uplifted and informed by our recent visit with the Chicago specialist, I went to my doctor expecting to hear that I would have an ultrasound and lab tests in April, and my next radioactive iodine uptake scan next November. I borrowed a breast pump yesterday from a friend, and this blissful image kept playing through my mind, despite my best attempts to push it away and ignore even the possibility:


And so I walked in, unaware. And God had to lift me up once again from a crumpled heap. I feel a little deadened today, numb to life, unable to process this level of pain over and over. There is an edge of anger to my thoughts, thoughts that feel like the burned edges of photos salvaged from a fire, singed and scarred. I wonder why God allows us to experience a false height of joy when He see the valley ahead? I trust He has a reason. But today it hurts.

For the sake of illucidating the details of my sad day at the doctor:
1) my lab test shows that the iodine has worked somewhat - it either killed cancer or functioning thyroid, because my hormone replacement is no longer adequate. (This is good news)

2) my cancer is not a slow-growing type, as all the other specialists have reassured me. It grew 1.5 cm in 1 month this spring, prior to being removed. Therefore, we need to be aggressive in treating and monitoring my cancer, at least for the moment.

3) I need my next scan ASAP. I was given two options: a Thyrogen-induced scan, which avoids the physical hardships of withdrawal from my hormone replacement, but costs about $25,000 (a cost of $2,300 for us); or the traditional approach, going off my medications for 6 weeks, followed by a scan and possible treatment (at a cost of about $40 to us). I chose frugally, on the hardship side of things. It is a hard day to be frugal.

4) My scan will be in late March. I will not be able to resume breastfeeding, because I would just have to stop again for 58 days following the scan dose. It isn't worth the trouble. I will have to be away from home for 5 days total surrounding the I-131 dose for the uptake scan.

5) My endocrine oncologist here in Eau Claire continues to think there is a high likelihood that I will require a second ablation, which means another 17 day separation from my kids and husband and just - life. Ugh.

Into November

You shall keep my Sabbaths and reverence my sanctuary: I am the LORD. "If you walk in my statutes and observe my commandments and do them, then I will give you your rains in their season, and the land shall yield its increase, and the trees of the field shall yield their fruit. Your threshing shall last to the time of the grape harvest, and the grape harvest shall last to the time for sowing. And you shall eat your bread to the full and dwell in your land securely. I will give peace in the land, and you shall lie down, and none shall make you afraid. ~ Leviticus 26:2-6 ESV

November is here in the northland. I woke up this morning feeling November deep in my body: I have been taken to the very edge of autumn. My cells are grinding to a halt. My joints are stiff and thick with fluid that refuses to soften and move. My hands are thick and heavy and my feet feel wooden. Every part of me is a little swollen, a sign of the waste products building up in each cell with no where to go. Nothing is working as it should. The side effects of the radiation linger because my body is losing it's capacity to heal in it's semi-functional state.

I went for a walk around a nearby lake to wake my deadened senses. All around me, autumn is coming to a close. What starts so flamboyantly with the scattering of seeds and conserving of sap in the core of the hardwoods, resulting in those flaming maples and umbre of the oaks, is now grinding to a mushy, windswept conclusion of barrenness. The once-golden carpet of leaves beneath my feet no longer swish pleasantly; the beauty of the leaves is turning to sludge in the cold. The wind has swept all the trees bare; the grasses have scattered the beauty of their heavy heads and rustle brusquely as dry coarse stalks before the gusts. The songbirds have long since left, and with them most of the ducks and geese; we are left with a few brave gamebirds and the crows and vultures for the winter.

Because the majority of us experience life in a very predictable progression of seasons, that is what I had come to expect. Childhood was like coming out of winter, just wakening after hibernation; my teens were the muddy wildness of early spring. My early 20's, late spring: crocuses, daffodils, planting the fields, the warmth of the soil rolling over under the cultivator for the sun. Then the warmth of early summer, as I bore my children and began harvest. There were hot, humid days when my work seemed stagnant and cumbersome and all I wanted was a long, summer nap. How surprising, to descend into November when so much summer was left! I am surprised to be here. I am praying this is a brief interruption, a little foretaste of seasons to come later in life. My intuition tells me that winter is a long way off, that summer will return, uncharacteristically bright and refreshing.

For now, here I am. In November. Taking long hikes by myself. Wondering how I will ever get warm again.

In November, the earth is growing quiet. It is making its bed, a winter bed for flowers and small creatures. The bed is white and silent, and much life can hide beneath its blankets. The bare November trees are all sticks and bones spreading their arms like dancers.
~ In November, Cynthia Rylant

Coming through the fog

I feel like I am slowly emerging from the valley of the shadow of this treatment. My throat feels better this evening, and I have stayed in an upright, non-sleeping position now for an amazing three hours! Ah, the small things in life...

I have some burns from the radiation, so that is bothering me a bit. I am hoping they resolve quickly, with lots of fluids. I have had 3 gallons of water and 1 gallon of pineapple juice to drink today, so that should help! Let's just say the bathroom is my most used room in the house right now. I have some kidney pain and I am hoping that resolves with fluids as well. I have cabin fever because I felt too ill to go out for my planned walk around the lake. Looking forward to day +2 tomorrow...a walk around the lake, maybe pick up some stamps at a grocery store. Sunday, an evening date with my aunt, uncle and parents for some iodine-containing food! I am already thinking about what I will eat. I wish I could just sit down to a bowl full of seafood, but I've read that it makes you feel sick if you eat it too soon after the I-131 dose. I'll probably stick with something more benign...hmmm. Dairy, butter, soft cheese, soy, cured meats, seafood, salt. Taste, maybe?? We'll see how my little buds are doing. I remember taking care of kids on transplant after radiation and all they wanted to eat was Doritos for about 20 days or so. I thought it was such an odd food choice at the time, but I am getting a sneak peek into the world of no taste buds! Doritos are looking pretty good right about now!

Misery

I have avoided using this word for many years after watching the movie of the same title and being more deeply disturbed by Kathy Bates' rendition of the main character than I have ever felt before. However, it captures how I feel today. I am sitting upright, forcing myself to type for a few moment before collapsing back in bed. I have a lot of throat and facial swelling from the iodine, complete lack of secretions (tears, nose and throat) despite all that I am drinking, pain when I use the bathroom, and complete and utter fatigue. All the things I was expecting, but the "lived experience" (as we nurses call it) is still a challenge. I am going back to bed now! Please continue to pray for quick healing from these side effects of the iodine. I am also begging the Lord that the iodine will do it's dastardly job and kill all the little thyroid and cancer cells in my body so I don't have to go through this all again in 3 months.