Oh my soul…

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Well hello there.  It’s been 9 months since I visited the pages of this journal so I just may be typing to myself.

During the past 9 months, like the 9 months that it takes to birth a new life, something new has been developing, growing and birthing in me.

I’m not sure if that means that I will consistently write in this space again but that may happen.

I’ve been up to soul care.  My soul care.  Sometimes, like King David, we need to speak to our souls.  I love the Psalms.  The honesty of David is so refreshing.  He was honest but always ended his prayers with attention directed toward God.  He may have been depressed, downtrodden, running for his life at times but in his honestly he found God to always be enough.  He could praise and worship the God who loved him only after pouring out his heart before him.  Sometimes he had to speak directly to his soul…Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God. Psalm 42:5

When Bob and I returned home after almost 11 months away for Bob’s cancer treatment and ultimate bone marrow transplant, I thought I’d pick up right where I left off.  But as Bob recovered I found that I needed a period of recovery too.

For so many months I ran 90 miles an hour without thinking much about what I/we were going through.  I had to stay strong, above collapsing, taking care of Bob, arranging hospital and doctor appointments, organizing the dozens of medications that he needed, making sure he received the correct doses at the right time, administering medications through IV’s, keeping everything sterile, watching him helpless; limp with barely being able to lift his head off of his pillow most days and feeling helpless when I couldn’t take his discomfort away.

Not much changed after we got home.  I was on high alert as Bob struggled with more setbacks and serious hospitalizations.  Go, go go… that’s what I did without much thinking, without much down time except praying and asking God to supply what I needed to keep going at that crazy pace.  I knew that I couldn’t get sick and that put more pressure on me.  There were times when I would think:  I feel sick.  What was that pain?  Oh no, I can’t get sick.  Bob needs me.  Sometimes my thoughts were irrational.  Stress will do that.

Bob’s doctors told us that it wasn’t going to be easy but we didn’t fully grasp the full scope of it until we got to the other side and looked back.

As Bob recovered and could do more for himself again, I found I remained on high alert not able to relax nor could I find lasting inner peace and quiet that I often experienced during the months away.  There was more peace during the hardest places because I was being carried…carried by the Lord even when I couldn’t feel it.  It’s obvious now in hindsight.

Many people run through life at high speed so they don’t have to face the truth about themselves or the thorny, painful, hurtful areas of life.  They know if they slow down they would have to come face to face with themselves, their fears and anxiety.  Running from the pain seems easier so they continue running in the wrong direction.   Trying to quench their thirst for God with counterfeit gods doesn’t bring lasting peace.  It’s just a bandage but won’t reach or heal the deep wounds of life.

What brings peace is being honest with ourselves, with God, facing our fears, hurts and surrendering them to God.   Then we can slow down and live at peace, because we’re no longer running away but toward the one who cares for us like a good father.

I’m by nature a quiet, reflective type.  It’s always been easy for me to unwind.  I always thrived on peace, quiet, and by being alone but the running to care for Bob, living for so long on high alert, in the flight or fright syndrome — not by choice but by necessity — I became accustomed to that lifestyle.  The hypervigilance that I lived for so long left me jumpy, waiting for the next crisis to respond to when I didn’t have to do that anymore.  It served me well for many months but began to hurt me when I couldn’t let it go after the necessity to live that way was gone.

I needed to face my fear, anxiety, claim it, speak it out loud, tell God about it and then surrender it all to him.  So I have been in process of letting go of the lifestyle I lived for so long and allowing a peaceful, quiet life to be birthed in me again.

That’s where I am.  I haven’t been gone just facing myself, those deepest fears, anxiety, realizing it’s okay to rest now.  Jesus says:  “Come to me, all you who are weary and burdened, and I will give you rest.”  (Matthew 11:28)   It’s been good for me to rest in Christ.  

Healing comes in different ways.  Bob is in a complete molecular remission and I am healing emotionally.

Here’s a great song that speaks to me right now.  You may like it too.  Sometimes we just need to speak to our soul like King David did…

It’s all good, because like the lyrics by Casting Crowns says … “Oh my soul you are not alone.  There’s a place for fear to face the God you know.  One more day he will make a way.  Let him show you how you can lay this down.  Cause you’re not alone.”

That’s for me, for you, for all of us.

Blessings,

Nancy

When Suffering Becomes a Gift

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We are handing in the keys to our temporary home tomorrow.  After almost 11 months, this place is no longer needed.

The most intense part of my husband’s Leukemia treatments are behind us.

We spent 3 weeks at our real home this month and returned here this week for Bob’s check-up and biopsy.  He’s still in remission and we are going home for good now only to return for periodic cancer checks.

As I walk through the rooms of this small apartment packing up the last of our belongings, I can’t help but think back on all that’s happened here.  There were many days of uncertainty.  Many lonely nights for me as Bob spent days, weeks, months of his own lonely days and nights in the hospital for treatment.

There were dressing changes, IV magnesium and antibiotic infusions done here and long periods of time when all Bob could do was sleep in this space that we called home.  And all I could do was feel helpless — with only a prayer in my heart — as I watched him go through his suffering.  There were several emergency trips to the hospital after the bone marrow transplant, because of infections, virus’, graft vs host rashes, low blood pressure and a fall that ended up with a stitched forehead.  Then there were the re-admittance to the hospital times, because those side effects and illnesses became serious.

And there were times when I looked up and asked, “Where are you God?”  There were times when Bob cried out, in familiar to us words,…”My God, my God why have you forsaken me?”

And that’s when Christ identified with us.  That’s when His presence became more real.  That’s when His compassion flowed into our hearts and uplifted our spirits.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.  For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows.  2 Corinthians 1: 3-5

And that’s when suffering becomes a gift.

So we leave this place changed.  We are forever changed and forever grateful knowing that God won’t waste our pain and grateful for this apartment that so often became our holy ground even in the middle of the not so wonderful times.

God doesn’t waste a second of our suffering.  There’s purpose in everything and the hardest of times, those times of trouble prune away the unnecessary to make room for the necessary.

Blessings,

Nancy

( I shared how this apartment was provided for us here: Your answer could be right around the corner and a little of our holy ground experience here: An Unexpected Gift)

Coming Alive Again

It’s a crazy mixed up world we live in.  All you have to do is turn on the news to realize that.  Then there’s our own personal challenges added to the mix.  And…well…that can make us feel overwhelmed.  But there’s still beauty to be found in the middle of the broken.  My camera helps me seek and find it.  I’d like to share another poem that I wrote, several years ago, that was just published.  Go figure…just published after all these years!  Another surprise for me.  I thought I better hurry up and post this since spring is going to shift into summer soon…

Coming Alive Again

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In spring there’s a freshness

and a beauty unfolds,

all that was sleeping

awakens for us to behold.

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There’s a sigh of relief

that winter has ended,

even the birds are aware

of all that is splendid.

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Woodland animals awaken,

peeking out their faces

slowly at the beginning,

from their resting places.

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Everything comes alive

like a rebirth,

a sense of anticipation

fills the whole earth.

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Dormant flowers rise up

to feel the sun’s warmth,

brown grass turns green

and color comes forth.

colors of spring

Gray skies become blue,

clouds look like marshmallows,

a tapestry on the ground

that is no longer fallow.

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A colorful picture

and a marvelous sight —

when the world around us

is no longer black and white.

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Written by:  Nancy Janiga

All photos taken by: ©Nancy Janiga

Our spring is coming

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They are telling us that we’ll be here until spring.  Who would have thought that we’d be here, in this place, longer than we would be home in the time span of a  year?  It could end up being a total of 8 or 9 months.

They tell us we’ll be living a “new normal.”

There isn’t anything normal about this.  Cancer isn’t normal.  We weren’t created for it.  God has given us life.  So we fight for that precious gift daily.

Jesus wept at Lazarus’ grave.  He weeps with us too.  Our sorrow becomes His sorrow.

The truth is this world is fallen.  We were created for life~for right here forever~but it was stolen away from us.  Now we live with glimpses of paradise but this world isn’t paradise.

Part of the fall brought with it sickness and disease.  It has affected Bob.  He is fighting for his life and until the Lord tells him to quit fighting here~and welcomes him into his eternal home~he fights on and I fight alongside of him, because life is a gift!

God has a plan in all of this and it’s unfolding.

Summer, Fall, Winter…  The seasons changed.  And so have we.

It has brought us back to a vulnerable childlike place.  But isn’t that exactly where God wants us?

We don’t experience His presence unless we are humble, vulnerable, like little children crying out to a parent.  And what good parent ignores a child?  And what good papa doesn’t quiet the cries of his children?  Abba, our papa cares.  He’s a good Father.

Bob and I have a question that we ask each other often.  That question is…  “Is it time to lament?”

You see one night when things looked bleak, when we didn’t think we could go another step and we were tired of being strong, I said, “Christians have lost the art of lamenting.  We need to lament.  It’s not an option.  It’s a necessity.”

So lament we did.  Lying in bed we cried, cried out to God, not with fancy words or prayers.  No, just with the truth of how we were feeling.  And you know what?  We fell asleep in the arms of God.  And the next day brought peace and answered prayer.

We are looking forward to the end of this storm, this winter that we are in.  We are looking forward to seeing all the signs of spring and new life…The crocus’ poking up from beneath the snow, the sun shining brighter, the patches of snow disappearing and the grass greening.

We are looking forward to spring with the hope of being home where we can live out what the medical staff is calling our “new normal.”

Blessings,

Nancy

(Transplant day is Wednesday, January 13, 2016.  Scott’s bone marrow will be harvested that morning and Bob will receive the infusion that afternoon.  Thank you, our friends, who have been so faithful in prayer.  We love and appreciate each one of you.)

An Unexpected Gift

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This place so far from home, the one we live in close to the hospital some may call isolation but we call it holy ground.

It’s a new normal.  A place stripped of most of our possessions but here in the quiet we have found God to be more than enough.

His presence is often experienced the most in our deep nights of the soul.

We are experiencing Him in new and profound ways.

That’s a gift.

Cancer.  My husband’s cancer has caused us to go deeper with God, to experience His peace that passes all understanding more frequently.  Especially in times of fear when we feel lost and alone and cry out to Him.  It may not happen immediately but He always lets us know that He hasn’t abandoned us.

We will never be the same.  You can’t go through something like this and ever come out on the other side of it the same as you entered into it.

Often God’s mercies are wrapped in unexpected ways.

Look at Jesus.  Away in a manger no crib for a bed…

Who would have thought God would wrap His most precious gift of love, grace and mercy in swaddling cloths?

Who would have thought God Himself would come to earth in such a lowly, humble way?

Truth is His most precious gifts often come wrapped that way.  In ways that we would never expect.  His gifts are perfect and right on time.

We prayed for 4 months that a bone marrow donor would be found for my husband.

Many have prayed.  Perhaps you prayed too.

The news came that a donor could not be found through the registry.

More chemo.  More waiting.  More praying. More hoping.

Then the miracle came.

Our oldest son, Scott, tested as over half a match.

Not perfect but good enough.

It’s good enough for a haploidentical bone marrow transplant.

These types of transplants have been done successfully at the University Research Hospital where the transplant will be done.  All transplants come with benefits and risks.  It’s not easy by any means but we trust God with the outcome.

On January 6 my husband will enter the hospital.  His immune system will be suppressed through more chemotherapy and radiation.

On Januray 13, Scott’s bone marrow will be harvested and given to Bob through an IV.

My husband, Bob, will receive the gift of life through the son that he gave life to.  The son we gave birth to is giving his father a second chance at life.

Who would have thought that the answer; the gift would come through our son?

We celebrate the most precious gift ever given in Jesus this month, the one who has given us life eternal.

And we receive with grateful hearts His precious gift of mercy wrapped in the most unexpected way through our son, Scott and we thank our son for his most special offering.  Certainly it’s the best gift that he’s ever given his dad for Christmas.

We are going to have a Merry Christmas knowing that our God knows what He is doing and although a perfect donor match could not be found He is going to give Bob a perfect transplant.

Merry Christmas!

Nancy ❤

( The photo was taken of an angel adorning our beautiful European Cyprus Tree.  Both the tree and ornaments were sent to us by some dear friends)

Our Hearts Are Being Refreshed

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It’s early.  I woke before dawn and watched daylight break through the darkness.  I glance at the cup a dear friend sent to me and read the prayer printed on it.

“May God grant you courage, and through His grace provide the peace that lies in knowing He’s always at your side.”

More than ever I need to know this.  We, my husband and I, need to know this.

My friend sent two different but special mugs.  One for me and one for Bob.

The other mug says:

FAITH, is being sure of what we hope for.  Hebrews 11:1

Our hope is in the Lord.  Our hope is knowing that He will give us strength and courage to walk through this valley.  And as the prayer on the cup says…and through His grace provide the peace that lies in knowing He’s always at our side.

We believe.

Bob went to sleep with those words on his lips last night:  “I believe.”

There have been bursts of glory knowing God is near as His overwhelming presence carries us.  It’s actually more than knowing it.  We’re experiencing it.

We arrived here in this place, 170 miles and three hours away from our home, at the end of August.

It is the beginning of December now and we are still here in our home away from home.  In this apartment 2 miles away from the hospital where Bob is being treated for Acute Lymphoblastic Leukemia, we are living our new normal.

Bob spent 34 days in the hospital during his induction treatment.  Now he is having his treatments out patient as we wait for news about a stem cell/bone marrow transplant.

A donor match hasn’t been found.

We’re running against time and soon the transplant team will be making a decision to do either an umbilical cord blood transplant or use a 1/2 match from a family member in an attempt to save Bob’s life.

Chemotherapy alone will not keep the aggressive fast growing cancer in remission.

Without the quick decisions and chemotherapy program that Bob’s doctors designed for him, he may not be here today.

We were whisked away within days to begin his treatment.  They didn’t waste any time.

Bob is in remission receiving chemo to keep it there until a transplant can be done.

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A couple of weeks ago, we found flowers on the doorstep of the apartment where we’re living.  A gift from friends back home.  I clipped and arranged them, put them in a vase and they have been giving us many days of joy.

As we look around at the gifts and cards that so many friends have sent we’re overwhelmed with gratitude.

My sister and her husband have been coming at least once a week.  Dave stays with Bob and Judy takes me out for a while.  My other sister, Diane and her husband Andy visit and Diane meets Judy and I for lunch often.

The doctors and nurses ask me, “What are you doing to take care of yourself?”  It’s easy to forget that if I don’t take care of myself, I won’t be able to care for Bob.

My sisters have been lifesavers for me, rescuers who won’t let me slip into depression or neglect my emotional or mental health.

Our sons; our daughter-in-law ~ ~ they’re like life-saving medicine to our hearts.

My brothers, my parents, many friends ~ their cards, their calls, their texts, their visits, their prayers are bathing us with hope and courage. We have an army of prayer warriors standing with us in prayer.

We arrived here in the summer…

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Saw the beauty of autumn come…

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then slowly slip away…

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and stood amazed at the winter wonderland of our first snowfall…

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Through the seasons of change and waiting, we are refreshed by the love and prayers of so many people.

In the fights of life, people can be conduits of great joy and deep refreshment.  Margaret Feinberg

There are many friends and family members fighting this fight with us.

Your love has given me great joy and encouragement, because you, brother, have refreshed the hearts of the Lord’s people.  Philemon 1:7

Blessings,

Nancy ❤

(All photos were taken by me in or near our home away from home.  I believe God has given us the ability to find and create beauty in the middle of this messy often painful world.  I hang tight to Him and to His promises and will continue my search for beauty through my lens)

When God sends messengers

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My husband, Bob, has been in the hospital for a little over two weeks. He’s already had 4 rounds of intravenous chemo and they just changed his oral chemo med tonight. The oral chemo targets the Chronic Myeloid Leukemia.  The intravenous chemo targets the Acute Lymphoblastic Leukemia.  The CML mutated into ALL but the CML still exists.  The doctors tell us that both cancers have the Philadelphia Chromosome, which makes his condition rare and difficult to treat.  Since they don’t have much data to fall back on with this rare combination, his medical team came up with what they are referring to as a “hybrid treatment plan.”

He’ll receive round 5 of intravenous chemo this Thursday.

All his blood counts are in the range that the doctors expected them to be this week and overall his doctors are happy with how Bob is responding.

About 4:00pm yesterday, Bob’s chemo nurse told him that he would be receiving another chemo drug by injection on Friday and that his doctors would explain more about it in the morning.

Bob wasn’t expecting to receive anything on Friday so the news was overwhelming and hard for him to hear.  He slipped into depression.

I wasn’t there when he heard the news. I returned at 5:00pm.

I usually park in the parking garage but decided to go in the emergency entrance when I got back to the hospital.

As I entered, there was a man sitting in a wheel chair by the door. He looked at me and asked if I was a volunteer. I said no. He asked, “Do you work here?” I replied, “No, I’m on my way up to the 5th. floor to visit my husband. The man asked, “What’s your husband’s name?” I responded, “Robert”. “Can you give Robert a message for me?” he asked. I nodded. Then he said, “You tell Robert that I’m praying for him and to keep the faith!” I smiled, thanked him and told him that I’d definitely give him the message. As I approached the elevator, he yelled out “You both keep the faith!”

How can we not keep the faith when God sends messengers (perhaps even angels) to encourage us daily?

Bob’s words after he heard the message? “Our God is good. He is reminding me that He’s right here with me and He’ll never leave me.”  His spirits lifted.

Peace returned to Bob’s heart and he rested well last night.

Blessings,

Nancy

(I snapped the above photo from Bob’s hospital room)