Jehovah Shammah

Chemo number eight is over and four more remain. Many people don't have a finish line laid so clearly before them.
I should be excited about that, I know.

Today I was able to blow dry and style my hair. Most people don't have any hair to brush at this point in treatment.
I should be grateful for that, I know.

So why do I find myself feeling numb instead of happy when the voices of loved ones celebrate that "there's only four more!"When did my heart change from a song of praise for each day I still have hair, to a frenzied assessment of whether I lost more today than yesterday? (I may or may not have a trash receptacle dedicated to measuring each week's lost and found strands). Where did fears of relapse and possible long-term chemo side-effects find an audience in my mind? How did that sly devil of doubt slither into the bed of my faith, messing up my freshly-laundered, tightly-tucked covers?

I should read my own blog and rest assured of His love, His presence, His healing, His provision.
I should be able to work longer, get up earlier, exercise harder (or at all), feel better sooner.
I should be praising louder, praying stronger, loving better.

But, it's time I stop "shoulding" all over myself.

The truth is that, even though I think I know who I should be, I am not that person. I often don't know who I am. Sometimes I even forget who He is. As I trudge along in this marathon, I am just as desperate for His presence and His reassurance as when I began. I found myself in a mini faith-crisis just this week as I questioned the role of the Holy Spirit in my life. I spent hours researching our faith history, curious to find out who or what is influencing my current thoughts and beliefs about God. Am I a cessationalist  or sensationalist? Am I charismatic, neo-charismatic, radical, reformed, or just wrong and weird? By the end I knew only that I didn't know. And I knew that I needed to hear from Jesus (cross-out cessationalist, then), because every theological quest I've ever begun has at its core a question of deep, personal significance. This week my question was simple, "God, do you still see me? Do you really speak to me? Do you love me?"

I finally turned to the old, weatherworn pages of my Bible (weatherworn because I left it in the rain, not as a result of some extreme scriptural devotion). I read about "Jehovah Shammah," the Lord who is there.

"Be strong and bold, have no fear or dread of them because it is the Lord, your God who is with you. He will not fail or forsake you." Deuteronomy 31:6


"...and remember, I am always with you, to the end of the age." Matthew 28:20


"...this is the Spirit of Truth, whom the world cannot receive, because it neither sees him or knows him. You know him, because he abides with you and he will be in you." John 14:17


"...be content with what you have, for He has said, 'I will never leave you nor forsake you.'" Hebrews 13:5

Theology meets Theophany. The Word became Life and my belief became sight: He will never leave me nor forsake me! As those precious words have soaked in my heart this week, I've learned a little about who I am and who I am not. I am not loved for who I should be, but as I am. I am not loved because of who I am, but because of who He is. But most importantly, I am loved. Even though I wish this moment of clarity and  faith would carry me through until eternity, or at least the end of chemo, I have a feeling that when I wake up tomorrow morning I will need to hear it, believe it and see it once again. Jehovah Shammah will be there...which should help me stop "shoulding" so much.

Kendra and John chemo-sat for #8

The perfect place for a recovery weekend

Keeping Vigil

vig·il

   [vij-uhl] 

noun

1.

wakefulness maintained for any reason during the normal hours for sleeping.

2.

a watch or a period of watchful attention maintained at night or at other times: The nurse kept her vigil at the bedside ofthe dying man.

3.

a period of wakefulness from inability to sleep.

It seems it has been awhile since my last update, since the celebration of the first of what I hope to be many more "clean scans." Thanks for your ideas about how I might now approach my remaining chemo treatments (5 more!) Vacations, celebrations, songs and poetry are dreams now swimming in my head. Today, I thought I could share how one of those suggestions has transformed my dreaded Thursdays into times of beauty. 

Two different friends in two different spaces and places suggested to me the idea of "praying the hours". I was unfamiliar with this ancient concept and after studying it some the past few weeks, I have found myself appreciative and enriched by the heritage of saints, brothers and sisters that have shared in it. 

To explain, briefly and imperfectly, praying the hours is a way to recognize the sacredness in the hours of the day. It's a way to maintain a posture of worship. Sounds good, right?!? If aware, we can appreciate and mimic the progression of a sleepy-sunrise stumbling towards the midday sun. We can take a moment to pause in the middle of our work day and reconnect with our Creator. A deep sigh and sunset on our drive home slows us into evening, as we fall gracefully into an embrace of darkness, sleep, and silence....anticipating the sunrise of the next day. God's way of building worship into the simple experience of our day has been overwhelming me. 

The hour I've found myself most relating to is actually the hour dedicated for those who awake in the middle of the night. It's the hour of those who can't sleep. It's the hour for those who suffer. This is the hour of vigil, traditionally prayed in the middle of the night or early in the morning, meant to embrace the darkness, to stand firm in the silence with those who have lost the strength to stand.

Macrina Wiederkehr in Seven Sacred Pauses: Living mindfully through the hours of the day speaks this way of night vigils: 

"Rising from sleep in the heart of the night, I keep vigil with eternal questions....Holding vigil with the Guardian of Life, whose eye shines down upon all who live in terror of the night, I become quiet. In the middle of the night I hold hands with trust and surrender to the One who sees without a light....Like Jesus, keeping watch the night before he died, I keep watch with those who wait alone...I keep vigil with those whose tired hearts have lost hope. In the middle of the night I pray for those who sleep and those who cannot sleep. I pray for those with fearful hearts, for those whose courage is waning. I pray for those who lost vision of what could be. When I rise in the middle of the night, my prayer is simply one of waiting in silence, waiting in darkness, listening with love." (pg 29-31)

I may be drawn to this hour of meditation because those pesky hives and hot flashes keep waking me up every two hours. Being someone who typically enjoys uninterrupted sleep, these past few months have been...unusual. Anxiety-driven prayers for more sleep, wide-eyed staring at the ceiling for hours, and flip-flopping around the bed have proven unhelpful, so I changed my perception of these night awakenings. They are no longer annoyances but invitations. I'm no longer being inconvenienced, rather, invited to worship. Helplessness morphs into purpose as I take up arms with Jesus in the darkness, keeping vigil with Him, for those who also sit in darkness but feel like they are there all alone. No one should feel alone. 

Even though this started as a night-time prayer ritual, the flavor of these prayers has followed me into the day, especially on those chemo Thursdays where I find myself surrounded by people embracing suffering. I see some purpose in my chemo treatments because I now know I am fighting for them. 

Oh, but don't feel sorry for them. These friends of mine are warriors, too. Most are much more brave than myself. I want to tell them this. I want to shake their arms and look into their eyes and tell them how very brave they are, for driving to that chemo office again and again. I want them to see how humbled I am by their cancer scars, their years of uncertainty and fighting to survive for.....well, for kids or pets or just because they know nothing else but to fight. I want them to know they are seen, that their battles matter, that they are never alone. Their stories give me courage to walk into another treatment with my bag full of prayer shawls, crackers, cucumber-mint water, and earbuds. Their faces remind me of an unsettling reality: there is a battle with a long, dark night ahead, and I'm going to take the night watch. Well, not just me. The sweetest part of these vigils is the face of Jesus, who never stops standing vigil for us all. I'm just privileged to join him for whatever short time my weak flesh can stand to keep watch.

I thought maybe this idea would relate to more than just cancer survivors. I thought others who find themselves awake in the middle of the night with a crying baby, or working the night shift, or unable to quiet their mind from the worries of the day might find comfort in joining the vigil. There is purpose in the night. The darkness doesn't need to be scary, just find those of us keeping our light on in it. Most importantly, find the One whose heart is a constant vigil for you.

#6 Not punching him,
just excited to fight cancer.

#7 was a birthday celebration
with Hannah and Laura! 

Yum Yum knows how I feel after these Thursdays. 

High Five Friday!

There's this thing happening, which I love, from some of the blogs I read, called "High Five for Friday!" What a great way to celebrate everything that's good from the week, 
so I linked up with Laura, From My Grey Desk

Here's my Top Five: 

1. 66 Love Letters by Larry Crabb

This book is changing the way I read the Bible....who knew Leviticus could be moving! 

2. AACC webinar by Dr. Moon and Dr. Tan about spiritual direction and the role of the Holy Spirit in counseling. I love what I get to do. 

3. Sick days. 

I felt icky and more tired that usual, due to a cold-allergies-chemo-who knows? The good news is that I enjoyed serious rest, caught up on reading, and found some new blogs to follow. 

4. SIUE Dental School Intramural Team are league champions! 

...and the championship game was at 11:00 last night-crazy college kids :) 

5. Catching up with friends through extended phone dates this week. Good for the soul. 

Happy Friday!  

Soli Deo Gloria

I'm happy to be writing this post. :)

While I know we are all, ultimately, on a journey to our real home, I'm very happy to report that it doesn't appear God wanted my exit plan to include Hodgkins Lymphona, at least not anytime soon!

Last Friday I had my first PET scan, and I anticipated getting the results this week during my doctor's appointment.  Usually, it's my secret goal at doctor visits to get my wonderfully-caring but oh-so-serious doctor to crack a smile. This week, I didn't even have to try. Dr. Visconti met me at the door with a giant grin and the good news: my first scan is clean! The fist-size mass taking over my chest cavity and invading the personal space of my heart is completely gone. My heart is grateful for the breathing room and I'm so glad for this good news.

What's extra-encouraging is research that shows people whose cancer is gone for the first scan have an even higher "cure" rate, which means it's less likely the cancer will reappear later.

Many of you celebrated with me this week. Thanks for joining our little Facebook party! While I'm full of gratitude, the news triggered a complicated grab-bag of emotions. I'll try my best to share with you through what I'm sure will be inadequate words.

It might help to know some context. Rewinding to Wednesday night, I started to feel afraid about the scan results. Most of the days since my diagnosis have been marked by surprising peace and a confidence that I was healed. But it's risky to hope for that, I felt vulnerable. What if I was wrong? I became terrified that the scan would show an unchanged mass of cancer. As fear hijacked my imagination, I was consumed with a picture of my body, "lit up" on the scan with cancer spreading everywhere. Yep, I'd successfully managed to terrify myself.

So on the Wednesday before another Thursday, Jonathan and I began to pray. Well, honestly it was more like me huddled in the fetal position, Jonathan standing over me, alternating between prayer and worship. I'd open an eye long enough to look up and see him with his hands in the air, praising our God. Jonathan's jubilant nature is hard to ignore and I eventually softened to God's influence too.

Fear became less powerful as the Holy Spirit turned my desire for peace into a reality. He made it possible for me to believe that nothing (of true importance) would change, regardless of my scan results.

When I did get the news about the clean scan I felt so happy, but nothing changed in the deepest core of my being. Rather than feeling a great sense of relief or being absolved of anxiety, I felt a happiness that comes from opening the perfect gift from someone you know real, really loves you.  I suppose this is a good thing. Maybe I'm slowly starting to believe in my heart what comes out of my mouth: death isn't the enemy, self-preservation isn't my goal. Soli Deo Gloria.

Even as I write this, I'm afraid I sound too flippant about the greatness of my news. For others, whose story never included a clean scan, I fear they would say I'm taking for granted my good report. I sure don't want to. I hope I can fully experience and celebrate God's gifts without making those gifts my God. I hope I'm learning to embrace my sufferings without abandoning His promises.

Floodgates of joy opened for me Friday night, as the news continued to sink in and I listened to the words of this song:

"And the arms that hold the universe, are holding you tonight. You can rest inside. It's gonna be alright. And the voice that calmed the raging sea is calling you his child. So be still and know He's in control. He will never let you go."  -Arms that hold the universe, Fee

"I'm going to be ok. It's going to be ok..." and that's not just because I have a clean scan :)

In addition to feeling joy, I think I'm also struggling to know how to get through the remaining seven chemo sessions. I need a new visualization, now that the mass is gone. I need something to be fighting for as I sit through those chemical drips the next four months. Any suggestions???

In the meantime, I fully intend to celebrate this gift with a "YAY!" balloon from Maura and a lunch date at Josephine's....and by wearing my cowgirl boots a lot.

Steph, Ramona, Liz and Hannah treating me to a celebratory lunch! 

Wednesday before another Thursday

"Well, it's a Wednesday before another Thursday..."

Jonathan's intro to our prayer before this week's chemo treatment. The words feel heavy with meaning for me, on the eve of another Thursday. I just completed my fourth treatment, which is the second round (of six), and makes me about 1/3 of the way done. I'm learning a lot about my body and how it responds to the drugs during each bi-weekly cycle. I can tell you that I feel it "hit" me about two hours into the three hour procedure. I know it's safe to eat Panera chicken-noodle soup on our way home, that I won't want to fall asleep that night, and that I'll spend the weekend distracting myself from the chemo-flu with friends, family, or some weird tv show about noodling.

I also know that I will feel 110% in exactly eleven days, which is three days before the Wednesday before another Thursday.

I love those three days. I feel like my old self: full of energy, strong, healthy. I celebrate by trying to wear extra-cute clothes and learning new styles for my hair. It's hard to say goodbye to all that on the Wednesday before another Thursday, hence the need for prayer night.

These times of prayer are the only way I know how to fight back against cancer. Being sick forces me to admit what I've always known, deep down inside: I'm not as strong, brave, or capable as I pretend to be. I'm certainly not in control of my world the way I'd like to be. But, prayer takes me into the presence of the One who is. The surprising thing is that I end up joining Him in the fight against cancer anyway, His way. He gives me the weapon of prayer, and has revealed an army of prayer warriors around me.

Like the men on Charleston Southern's division one football team, for example. Jonathan and I were enjoying our spring break trip to South Carolina, where Matthew is on the coaching staff for the Buccanners, when we met an army of unexpected warriors. The coaching staff asked if we could join them after a practice for prayer. We ended up surrounded by sixty football players, allowing them to "fight" on our behalf for this cancer to go away and for my heart to continue trusting in God. A very cool moment, (a very smelly prayer!) and a memory our family will always cherish.

Jonathan David Hesler talks about a "God of the Angel Armies" in this song:

Seems like all I can see, is the enemy surrounding me. Seems like all I can feel, is lies that you're not real. I lift my eyes to the hills, where does my help come from? My help comes from the one who made the earth and the Heaven....
I believe that you're more real, than what I can see. I believe these hills are full, of a mighty Angel Army. 
God of the Angel Armies, you're mighty to save. 
God of the Angel Armies, you are worthy of our praise. 
God of the Angel Armies, you fight for us. 
God of the Angel Armies, you come down, and praises go up. 

I wonder, what does God's army of angels look like, exactly? Are they at all interested in fighting this fight with me? I hope so! Until proven otherwise, I'm just going to imagine they look something like those 60 Buccanneers.

Currently, my army is engaged in a battle for more white blood cells. I need them and I'd like them in great quantity, fast! Against all odds, my hair maintains it's position on my head with, regrettably, a few more casualties than usual each time I shampoo and blow dry. The cost of war.

I'm also eager for my first PET scan since my diagnosis, which will take place this Friday. The hope and expectation is for a clean scan, "cancer free!" I will still continue treatments through August-my doctor couldn't be talked out of that one, even though I tried. Thanks again for all of your prayers, cards, meals, and encouragement. I hope I can continue to pass along the same to others.

#3 with dad

Celebrating "good days"

Kicking cancer hiney with Jon at #4

Let us be thankful boys and girls...

"Let us be thankful boys and girls, for eyes and ears and toes, and puppies with wet noses. Let us be thankful boys and girls, for lessons we have learned, love we have not earned. Follow the beat of amazing grace, Oh let us be thankful boys and girls." -Billy Crockett, "Thankful Boys and Girls"

Billy is on to something. Gratitude has proven itself a helpful medicine for the heart. I think its benefits are even undisputed in the world of psychology, where nearly nothing is undisputed.  I know it's been true of my journey so far. On one particularly dreary evening, soon after my diagnosis, Jonathan found me buried sour-faced under the covers. I'd been there for a while; despondent, melancholy, grumpy and otherwise pitiful. What a mess.

So he got under the covers too, which was his first wise step. Then he chose to say nothing, his second. He just hit "play" and let iTunes do the talking for us, praying God would choose a song that would minister to my heart. He didn't know what song would play or that it would start smack-dab in the middle of one of our favorites. This is what we heard:

"Thank you, thank you, thank you, thank you. Thank you for loving. Thank you for coming. Thank you, thank you, thank you, thank you. Thank you for loving. Thank you for coming." The voice moved up and down the scale in a maddeningly carefree chorus of gratitude, which could not have been more opposite of the chorus in my heart. The contrast between she and I was so dramatic that it prompted one of those "time stands still" moments. I felt like the world stopped, flipped inside out, and came undone.

Of course, thank you. Thank you. Thank you for coming. Thank you for loving. Thank you for solving my biggest problem: that I was once condemned in your presence and sentenced to an eternity apart from you. Now I am not. Thank you for coming, thank you for loving.

Thank you that I can call you Abba. Thank you for assurance of an eternity where I will be what you originally created me to be, where I will sing and dance the praises I'm meant to offer you and no longer spend my time hoarding praise for myself. Thank you that I will be free.

Thank you that I know there is purpose in all suffering, and while weeping lasts for the night, joy will come in the morning.

Thank you for your sweet voice, spoken to deep places of my soul since I was a little girl. 

Thank you that my cancer symptoms ALL disappeared one week before I started chemo. Night sweats, exhaustion, chest pains, a racing heart, an absent appetite, nausea, are all gone! I had a hunch those symptoms were unnecessary.

Thank you for blood banks and blood donors, but thank you that I need no more transfusions. Thank you that my red blood cell count stopped decreasing for the first time in six months and actually increased by a whole point before chemo started! Thank you that I no longer look like I should be cast in a "Twilight" movie and that my cheeks and lips are starting to get rosy again.

Thank you that I feel better with chemotherapy than before it started, minus a day or two of the week. Thank you that I have energy to do laundry, walk up the stairs, and dust my ceiling fan now.

Thank you that I still have all of my hair. Even though the doctors and nurses said it would fall out by now, thank you for each day it hasn't.  And if it does- although this also seems to me to be quite unnecessary- thank you for my wig, scarfs, and cute hats with big earrings that I'm ready to wear.

Thank you that I can imagine myself curled up under your protective wing, so safe, and that I can imagine little super-power white blood cells armed with sparkly, lethal light-rays breaking apart the mean, ugly cancer cells like a battle scene from Star Wars.

Thank you that I can continue to pray for every cell in my body, for every chemical being put into my veins to come under the ultimate power and authority of Jesus Christ- the power that brought dead cells back to life, put a beat back in a heart, and commanded open wounds be healed. I will pray that prayer for myself and all of my friends whose bodies are at war with cancer today.

Thank you for loving. Thank you for coming.

All I Ask of You

Good news! My port has a name.

It's Manilow, as in Barry. Shortly after Nurse Amazing (aka Diane) successfully accessed my port for the first time, an ad for the Barry Manilow special edition, best-of-the-best, solid-gold hits collection flashed across the screen of our community tv. Barry posed with his arms outstretched to either side, chin tilted to the sky, singing his heart out in a tight, white-leather, bling-bling jump suit.
"That's just the personality my port needs!"
 Charming. Engaging.
You're afraid of getting too close, but definitely glad he's around. I told Nurse Amazing and she humored me by referring to it by name the rest of our first chemo session.

In other good news, I've made it through two chemo treatments now, ten more to go. It wasn't what I expected, if one can have expectations for something so unexpected. The dreaded "c" words have lost some of the power their mystery previously afforded them. It seems that CANCER is  more like cancer. CHEMO is chemo, and I'm still....well, I'm still me. I spent the first Friday after chemo waiting for something to be different, expecting some outward, physical sign of the internal war begin waged within my body, but there were none. Some minimal side effects made the weekend a bit uncomfortable, but overall I was surprised that life kept going on, as did the dishes and laundry. Ahh, normalcy....well, except for one thing: Jonathan and I are being ridiculously and outrageously loved.

It's crazy, really, and I feel spoiled. We have been surrounded by supportive servers, which is a bit new for me. I've always been a pretty self-sufficient person. You can call it independence or maybe pride, I'm not quite sure, but this experience is new for me. I'm humbled and a bit convicted by the way people (even strangers!) have prayed, encouraged, and sacrificed time and money for us. Thank you. You have given us a new glimpse of the character of the Father.

Actually, being loved isn't the easiest thing for me.  I know that sounds crazy, but I'm typically more comfortable as giver rather than receiver. I suppose this allows me more control, less vulnerability, a self-protective strategy to meet my own needs and protect myself from pain, yada, yada, yada. Even though I prefer to appear like I have it all together, I so clearly do not. Being needy is kind of scary for me, yet I've heard Jesus challenging me to do one, and only one thing these past few months: Be Loved, beloved.

A good friend let me know that God had reminded her to pray for me through the night. I felt known and seen by her and God, but my conversation with God the next day went something like this:

"God, that was really sweet of you to get Barb involved, but you didn't need to wake her up just for me. I'm ok, really. I've got this. No need to keep her up all night on my account."

Instantly, I felt His presence settle and speak. "Let me love you. Let me love you through others."

Who am I to tell I AM who to love? Who am I to tell Him how to love? I wonder how many of His love notes I've missed, too busy striving for the love of others instead of resting in His love for me.

I want to share a song that, although not written by Jesus, sure sounds like Him to me.

 "All I Ask of You."

Will I let myself be unsettled by love? Will I say "yes" to the outpouring of support around me? Will I recognize it as the extravagant pursuit of my God? I hope I can! To those that have sacrificed, thank you for loving us, and thank you for letting God love us through you. I pray we each have eyes to see His pursuit in our lives. I pray we take time to be loved.