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Humbly Grateful

My magical recovery date was April 24th.  The surgeon signed the note; I was allowed to return to work without restrictions the last Monday of April.  This was to be the unfettered day when I would be well again.  April 24th.  I had it written in black and white.

I had progressed from wheelchair to walker, from walker to cane, from cane to hands-free.  I was ready to return to work and re-establish routine in my life.  I was ready to be productive, to create, to invest myself.  I was looking forward to being well.

Oh, how my heart clung to this whisper of hope!  April 24th.  Alas, this was just a date, and when it arrived, I wasn’t miraculously well.  Oh, how disappointment struck when I realized the unreality of my expectations.

Four days after returning to work, I was back in the emergency room.

During that eight hour occupation of the exam room, I had a series of tests, a myriad of labs done during three different collections, two separate ultrasounds, and another CT scan.  As I sat in the room between visiting medical professionals, I kept a running monologue with the Lord.  I honestly had no idea why I was there, but I knew it was exactly where I needed to be.

The night before I had mentioned to my husband that I wasn’t sure what was around the corner, but I knew whatever it was, the Lord would shepherd me through it. I explained to him that twice that day, through two different means, in two very distinct ways, I had encountered Psalm 23.

The Lord is my shepherd, I lack nothing.
He makes me lie down in green pastures,
He leads me beside quiet waters,
He refreshes my soul.
He guides me along the right paths
for His name’s sake.
Even though I walk
through the darkest valley,
I will fear no evil,
for You are with me;
Your rod and Your staff,
they comfort me.

You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
Surely Your goodness and love will follow me
all the days of my life,
and I will dwell in the house of the Lord
forever.

The first time I heard Psalm 23 that day, as I listened to our local Christian radio station, I remember feeling deeply touched by the words.  I was moved to tears.    There was a sense within me that I really needed to hear it; I listened intently.

Later that day, as I plodded through a book about how God uses disappointments in our life, I read the author’s interpretation of these verses.  I remember thinking that I needed to grab hold of the meaning of this passage; I had a sense that Psalm 23 was to remain in my awareness. The next day I understood why.

The ER doctor treating me that night returned to the exam room in a solemn manner.  She explained that I had a blood clot that was cutting off the blood supply to the left side of my liver. This was an unintended but not surprising complication of my March illness, surgeries, and extended bed rest.  To every piece of information she shared, I calmly responded, “Okay…”

She tried to impress on me the reality that this was serious.  “Okay…”

She tried to emphasize that this would be a long, involved process of healing.  “Okay…”

She tried to explain that this could result in further complications with my liver or other vital organs.  “Okay…”

Her words of diagnosis and prognosis were received by my quieted heart.  The Lord had already prepared me for that moment.  In His kindness and goodness to me, He reached into my day, before I was aware of what was to come, to remind me that He was already there.

“What is man that you are mindful of him,
    and the son of man that you care for him?”  Psalm 8:4

The God of the universe, who orchestrates all of life everywhere, is still mindful of me.  What a humbling thought!  He reached into the midst of my need and gave me peace.  He had been with me through all of the medical crisis and grueling recovery to that point; I had no doubt He would shepherd me through this too.

Then the doctor explained the treatment.

I could feel the peace of my heart slowly fade as fear, then terror, gripped me.  The doctor explained that I would need to inject myself in the abdomen twice each day until the oral medication was at a therapeutic level.

The issue was that I don’t do needles. I can’t watch phlebotomists draw blood. I can’t look at IV’s going into my arm or hand. I should be desensitized to it at this point in my life, but I’m not. I don’t do needles.

I told the doctor that I could not do it. When she told me the alternative was hospitalization, I asked her how long. She wouldn’t answer me; she was not going to let me wimp out. She told me that I could learn to give myself the injections. I wasn’t so sure.  She excused herself from the room and informed me that the nurse would be in shortly to teach me how to administer the shots.

As I sat alone in the exam room, I told the Lord between tears that though I had been able to adjust to all that a perforated colon had thrown at me… I grieved the colostomy… I learned how to change my ostomy appliance…  I had adjusted countless details of my life that I never expected to be impacted by it… I did not think I could do the treatment for the blood clot.  “This crosses the line!” I cried out to God.

“Yet give attention to Your servant’s prayer and his plea for mercy, Lord my God. Hear the cry and the prayer that Your servant is praying in Your presence this day.”  1 Kings 8:28

In that moment of fear and frustration, a gentle peace swept over my heart.

“I, even I, am He who comforts you.”  Isaiah 51:12

God identifies Himself as our comforter. He answered me with peace and reassurance from His word. The verse that flooded into my awareness was one that I often repeated when lap swimming as I pushed my body to swim faster or longer:

“I can do all things through Christ who strengthens me.” Philippians 4:13

I needed my body to do the unthinkable, and I knew that it was outside of the realm of own ability to complete this task.  My fear was paralyzing, but my faith in an all powerful God who loves me with an inexhaustible passion was greater still.  My fear said this treatment was unbearable, but my faith said that He would shepherd me through this.

The nurse entered the room.  With “I can do all things…” repeating in my mind and tears still welling in my eyes, I told the nurse I was ready to learn how to take the shots.

My nurse was a gift of compassion and kindness.  She patiently walked me through the process.  She comforted me as I cried.  She never rushed me; she stood beside me offering me grace and encouragement.  I cried so hard at some points that I couldn’t see the syringe I was holding in my hand. Several times, when I had convinced myself to push the needle into my abdomen, I froze.  I could not move.  I practiced deep breathing.  I kept repeating my mantra.  After uncountable minutes of tears and suspended movement, I did it!  I sunk the needle and depressed the syringe.  Every bit of the solution entering my abdomen burned; I continued to plunge it in.  The needle withdrawal was a rapid movement of victory!

 Inserting the needle and injecting the burning solution continued twice a day for fifteen days, as I stayed focused on the One who shepherds me and repeated the promise that I can do ALL things through Christ who strengthens me.  With only half of my abdomen available for injections, I had a limited area to work with.  I developed extensive bruising and large, rock hard hematomas.

As the medication thinned my blood, the skin breakdown around my stoma became significant.  One particularly rough day, as blood pooled in my ostomy bag, I required an impromptu visit at the wound-ostomy clinic with a check-in from the concerned surgeon.  Throughout this time, I had to learn new techniques and try different appliance set ups as we worked to minimize the exposure from my oddly shaped, oddly placed, retracted little stoma.

None of this was easy.  I got discouraged.

The Lord is my shepherd, I lack nothing.

I began to focus my thoughts on all that the Lord had provided up to that point.  My heart became overwhelmed with gratitude.  I tried to welcome the words of 1 Thessalonians 5:18 (Give thanks in all circumstances) and James 1:2 (Consider it pure joy when you face trials of many kinds). I tried to welcome these words, rather than allow them to guilt me to be in an emotional place I had not yet arrived.  As I re-focused my thoughts away from the difficulties around me and onto the many graces provided to me, my heart became overwhelmed with gratitude!

The reality is that my circumstances did not change.  I was still in the recovery phase after surgery.  My energy was still low.  I daily dealt with pain.  I still required injections twice a day and lab draws twice a week.

“From the end of the earth I call to you when my heart is overwhelmed. Lead me to the Rock that is higher than I.”  Psalm 61:2

Sometimes my heart gets overwhelmed… but God.
God is good.
God provides.
God comforts.
God sends comforters to me.
God is with me.
God is shepherding me through this.

I am humbly grateful.

 

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He is the One who writes my story…

By mid-April, I was six weeks post-op.  I wrote a “final update” to my friends and family. Though my long days of convalescing from surgery were coming to an end, the reality is that this was only the beginning of the story.  This was just one tumultuous chapter.

During my early recovery days, a rather thoughtless extrovert informed me that “ostomies are GROSS!”  As an inner-world processor who never has a clever come-back, I was surprised by my response for him: “Having an ostomy is better than being dead!”

Recovery from the surgery was a physically and emotionally painful process, but I survived.  I lived to experience more days; I can receive each day as a gift. I am reminded of a quote posted by the Crohn’s and Colitis Foundation,

“I know this transformation is painful, but you’re not falling apart; you’re just falling into something different, with a new capacity to be beautiful.”

~William C. Hennan

There was no “resuming normal life” following convalescing.  There was a new normal, a different normal to be learned and experienced and embraced.  I wrote of that time:

“Waves of grief over what I lost mingle with gratitude that I am alive. Throughout the last week I’ve had three different conversations with loved ones when they shared that during the first week of my hospital stay, they feared that I would not survive. The reality of what I endured is sinking in, what my body suffered and fought through. I know others have not survived this, but I did. I have a calming peace that reminds me that I am okay, but I also feel immense sorrow that I will never be the same. I cling to the Word of God that reminds me that every day of my life was written before one of them came to be (Ps 139:16); none of this took Him by surprise. Yet there is a part of me that wants to push back and scream, ‘THIS WASN’T SUPPOSED TO BE PART OF MY STORY!!!’ I shake my head in disbelief and wonder. I put my hand on my abdomen; the crinkle of the plastic pouch and rigid feel of the appliance awakens my senses and affirms that this is real. This is real. This is real, and I’m okay. It doesn’t always feel real, and I don’t always feel okay. I must remind myself that it is so. If the goal of grief work is acceptance and adjustment, then I must continue to embrace the grief. This is not a life change that I would have chosen, but this is part of my story. And I’m okay.”

 This is part of my story.  I wouldn’t have written a chapter this way; if under compulsion to write such an ordeal, I would have wrapped it up quickly and moved on.  However, I am not the author of my story.  My loving heavenly Father is the author of my life.

In His mercy and love for me, He is using this pain to shape me.  This is not a theological statement about whether God causes or merely allows tragedy in our life; this is a reminder of the promise found in Romans 8:28.  He will work all things together for my good.

He is using my frailty to renew me.  My continual prayer is that He empty me of myself so that I can be filled with Him.  If illness is His means, then I need not resist. He is using my brokenness and suffering to shine His light into my own darkness.  It is my prayer that the words I compile here will bring honor to Christ, and that He will use these words of vulnerability to shine His light into the lives of others as well.

This is only the beginning, and there are more chapters to be written: one about my liver and one about a vicious bacteria.  I am not well.  I do not know when I will be well again, but this is part of my story.  And I’m okay.

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One Step at a Time (Rehab!)

After thirteen days in the hospital, the first eleven without food, I was ready to be discharged.  What started with a text to my supervisor on March 3rd, letting her know I thought I needed an antibiotic and was going to be a little late coming into work that morning, was ending nearly two weeks later, following two abdominal surgeries.  It was now mid-March.

I was ready to be discharged.  I was a different person leaving the hospital than I was when I entered.  I had lost twenty pounds.  I had lost a third of my colon.  I had gained open wounds, stitches, and staples.  I had gained a left-side stoma.  My arms and hands were a series of bumps and bruises from requiring two concurrent IV sites, which were changed every few days to maintain viability of access and daily lab draws to monitor infection and system functioning.  The backs of both arms were deep shades of black and purple from the heparin shots given every 8 hours.  My body endured significant trauma from the infection, from the cocktails of antibiotics and pain medications, from the surgeries.  I was alive.  I was different, but I was alive.

I was ready to be discharged.  I had lost the ability to control movement of my left hip and leg following the left-side colectomy surgery.  I had lost the ability to put full weight on my left leg.  One of my successes for that day’s final in-hospital physical therapy session was the fact that I was able to transfer myself from sitting in a wheelchair to standing with a walker, then slowly shuffle right – left – right, then sit back down in the wheelchair that the physical therapist rolled up tight against the back of my legs.  I wasn’t really sure we could call it walking.  Much of my weight rested on my arms and walker, and I lacked the strength to actually pick up my feet to step.  Either way, we called it progress!

I was ready to be discharged.  I still required assistance with movement I used to take for granted, like sitting up in bed.  I still required complete assistance with personal cares, all the typical things like getting a cup of water to brush my teeth in bed and all the new things like learning to empty my ostomy bag.  I still required wound care, as the battles fought in the operating room had left me with five new abdominal scars.  I still required all my meals to be prepared by someone else and served to me on a tray in bed.  My daily existence was confined to my hospital bed.

I was ready to be discharged.  My insurance company wanted to send me to a rehab facility an additional hour further away from my family, requiring a four hour round-trip commute would they come to visit me.  In answer to the prayers of many, the hospital social worker was able to present my case and get approval from the insurance company to authorize my stay at a rehab center ten miles from my home.

The discharge from the hospital, with the many hands assisting my transfer out of bed, into the wheelchair, out of the wheelchair, into the vehicle, as well as the ride to the rehabilitation facility, are a bit of a blur for me.  My husband recounted later the challenge and anxiety of the drive for him, as he ferried his precious and fragile cargo from one care facility to the next.

I do remember my arrival at the rehab center.  Unknown to us, the nurse from our church family who works at the facility, was waiting for my arrival.  Once I was transferred into the wheelchair, she wrapped her arms around me and gave me a warm hug.  I was so weak; I’m not sure I even had the strength to hug her back.  All I remember is feeling held and safe.  I felt like I could take a deep breath for the first time in two weeks!

My transition at the rehab facility did not go smoothly, but I watched the staff work with genuine compassion, despite the challenges we all were facing.  The physical and occupational therapy I received was fantastic!  Their goal was the same as mine: to get me home.  We were all working together for my success.  I felt tremendous gratitude.

The stoma-healing diet was as much of a challenge for me as it was for the kitchen staff who prepared my meals.  I began to count on white fish and peaches for lunch, along with boiled chicken breast and peaches for dinner.  Thankfully, they also provided chocolate milk and chocolate ice cream any time I made the request!  It was the only time in my life I did not care about those chocolate calories!

Visitors were more frequent, as I was back in our area, close enough for friends and church family to stop by.  The look on one friend’s face when she entered my rehab bedroom spoke more than her words ever could; her uncontrollable tears communicated the pitiful reality of my current condition.  My 5’10” frame of solid structure lay weak and resigned in my bed.

I kept mostly to myself, stayed mostly in my room.  I was a woman in my early fourties; a feeble body was the only thing I had in common with the other residents who were twice my age or more.  After a few solitary days, I began forcing myself leave my room to prevent depression from settling into my heart.  I would set my piano books on my lap and wheel myself into the sitting room where the piano resided.  Various residents would be present, staff would wander in and out.  I would play for as long as I had the physical strength to remain sitting up.  I played old hymns.  Some of the residents would sing along to favorites.  I played contemporary worship songs that helped me to reflect on the sovereignty of God.  I would often cry as I played.  Many expressed gratitude for the music, but I knew that I was doing it to heal my own spirit.

Physical therapy focused on helping me strengthen my left hip and leg while learning to walk safely with a weak side.  If I was asked to do ten knee bends, I would do twelve.   If I was asked to stand at a counter-height table to work on a task for ninety seconds, I would stand and work for two minutes.  The goal of physical therapy was to teach me the adjustments I would need to make for being successful at home while simultaneously working to rebuild some of the strength that I had lost.

Occupational therapy focused on helping me regain independence with personal cares, including techniques for bathing from a seated position.  I learned how to use assistive devices to take socks on/off and to reach for items without bending.

Wound and ostomy care were attended to by the nursing staff.  One of the surgery sites became infected and required the nurses to insert a wick each day into the open wound to draw the infected fluid out.  Stoma care was challenging due to many factors, including the daily changing stoma size as it healed, the irregular football-shaped stoma, the placement of the stoma on a natural abdominal crease, and the retraction of the stoma itself.  Each nurse had different experiences with ostomy appliances and accessories; each nurse approached the ostomy care differently.  I soaked it all in, trying not to be overwhelmed or confused but rather to learn unique techniques and tricks from each of them.

Physically I was seeing small daily improvements; the staff rejoiced with me over each gain.  Emotionally I was welcoming and embracing the grief over what my body had endured and over the impact this was going to have over so many areas of life.  Spiritually I was being nourished by Bible reading, prayer, and regular encouragement from my church family.  Yet every night, I cried, longing to be home, longing to be with my family, longing for the comforts of familiar surroundings.  The days counted on.

One night in rehab, I wrote the following:

A friend gave me the book JESUS TODAY. One of the devos encourages, “Let pain and problems remind you of your constant need for Me. Create a collection of brief prayers, such as ‘Help me, Jesus. Fill me with your peace. Show me your way.'”

Today has been hard. I’ve really concentrated on Philippines 4:8 – the whatever is good, lovely, ect. Thinking about those things. I wrote a list of today’s good things. I tried to express gratitude to everyone who I encountered today.

But in many of the quiet, uninterrupted moments of today I just cried. 14 days of wearing my big girl boots, too much to take in, no option beside bravery. And now the tears seem to come. A lot of tears.

This evening as I sat crying, I recalled the reminder to use a brief prayer to speak my heart, and so i just began repeating, “Jesus, be near me. Jesus, be near me.”

A young nurse’s aid walked into my room at that time to check on me… and then spent the next 40 minutes with me, helping me care for myself and get cleaned up before bed. She rubbed on lotion. She even tucked me in.

And when she left my room, I knew that Jesus had answered my prayer through her. Her hands were His hands of ministry to me. Her kindness was His kindness to me. He is near. He is loving and good.

That truly speaks of my experience through my early days of this journey.  I continually experienced Jesus through other people.  Our church family faithfully delivered meals for my husband and three boys.  I was showered with cards of encouragement, including a special poster colored by the 3rd and 4th grade class at my youngest son’s school with an encouragement from Psalm 46.  Bouquets of flowers brought the outdoors into my solitary space.  My paraplegic friend sat wheelchair to wheelchair with me as we discussed how God uses tragedy in our lives.  My pastors took turns visiting me, providing a devotional thought, praying for my healing, and offering me communion.

In the midst of all of this sorrow, all of this pain, I continually experienced the presence of Jesus.  He is kind.  He is near.  He is loving and good.

 

From Colon: to Semicolon;

The pain started in mid-February; I made mental notes of its location, intensity, and consistency.  This is where my ostomy journey began.

Having been diagnosed with Crohn’s disease many years earlier, I had learned to be mindful of the message pain announced without giving in to worry.  I had learned that communicating with my medical providers meant providing very specific details about symptoms.  I had learned that abdominal pain can disappear as abruptly as it occurs.  It was not until this particular pain increased in both intensity and consistency over a two week period, that I decided I should be seen.

I made an appointment at my local clinic.  I tested negative for a UTI.  I was given a prescription for bladder spasms, despite my gentle protest that I did not think the pain was a spasm.

The following day, the pain intensified to the point of alarm.  It was March 3, 2017.  My husband drove me down to where my Mayo Clinic gastroenterologist doctors.  A CT scan revealed a small perforation in my colon and an abscess.  I was immediately hooked up to IV fluids and antibiotics and admitted to the hospital.  I was to have nothing besides ice chips for the next several days; my digestive system needed the rest, and though surgery was a less likely option, I would need to be ready if my situation took a turn.

The nurses, hospitalist, on-call surgeons, on-call gastroenterologist, and aides were all warm, compassionate, and encouraging caregivers.  I felt safe with this team of professionals and trusted the treatment I was receiving.  Yet the second day of my hospital stay, the on-call surgeon performing rounds blew in like a harsh gale.  His words smacked me hard, “If we had to go in today, you’d end up with a bag!”  And then he blew out again.  His words repeated in my thoughts; it was the buffeting reality I needed to hear.  This was the first time the concept of an ostomy had crossed my awareness.  Throughout the next couple of days, I discussed the ostomy idea with my husband, my mother-in-law, and my best friend.  I spent many quiet moments in prayer about it.

On the fourth day of my hospitalization, a follow-up CT scan showed that the abscess had nearly doubled in size. The antibiotics were not sufficient to fight the infection raging in my abdomen.  A surgeon told me she would need to go in to place a drain for the abscess; this would allow her the opportunity to look throughout the abdomen for other signs of disease and infection.  If things did not go well, she explained, she would need to resect my colon and place a stoma.  I assured her that I was at peace with this option, and that I trusted her knowledge and skill to do whatever was best.  In my heart and mind, I surrendered complete control of my body to God who is Lord of my life and to the surgeon who would be lord of the operating room.

The surgery went well; a drain was placed from the abscess to a collection bulb outside of my abdomen.  The recovery did not go as well.  After removing the breathing tube and decreasing the sedating medication, I stopped breathing.  An expert team swung into quick action, re-intibated and put me back into a medical-induced sleep.  They slowly woke me while my husband waited with our pastor for me to return to my hospital room.

The day following surgery was rough, but the second day brought more promise.  Determined to go home as soon as possible, after 6 days in the hospital, I completed four walks through the hospital ward.  I pushed through the pain, motivated by the self-imposed thought that my family needed me home.  This was the first day I was allowed to reintroduce liquids to my diet.  My husband, so optimistic that I was on my way to recovery, went home for the first time in three days.  No doubt his presence at the house was desperately needed by the three boys who were trying to manage life with school and sports and part-time jobs.

That evening, things took a bad turn.  After a brief, distressing phone call, my husband returned to the hospital.  It was an emotional 50 minute drive, fraught with fervent prayer, he recounted later.

We spent an agonizing night together: me in tremendous pain of body and he in tremendous pain of heart.  Ice packs rested on my forehead, the back of my neck, and down my arms in an attempt to reduce the fever.  The pain was unbearable; I was unable to restrain the cries of agony or the tears that spontaneously erupted.  My husband held my hand through the night in an attempt to bring me comfort.  Nothing brought comfort to my body, yet my husband’s presence brought comfort to my mind, and the Lord’s presence brought comfort to my spirit.

Even though I walk
    through the darkest valley,
I will fear no evil,
    for You (God) are with me;
Your rod (of protection) and Your staff (of guidance),
    they comfort me. (Ps 23:4 – emphasis added)

The surgeon came in the early morning; it was clear that she would need to go back in.  With complete peace of heart, I told her I was ready for the colectomy surgery.  She said she was uncertain if that would be the end result, but she needed to hear that I was emotionally prepared, if it needed to happen.  We all knew this probably needed to happen.  The Mayo Clinic hospital team had done their very best to avoid this outcome, but my body was taking its own course.

As soon as an operating room opened, I was taken into surgery.  As I was waking in the recovery room, it was the nurse sitting at my side that confirmed the reality: a large portion of my colon had been removed, and the surgeon had created an opening in my abdomen for placement of a stoma.  I told the nurse that I was sad about having the ostomy, but my heart was at peace.  I quoted a verse from my favorite Psalm to the nurse, “Every day of my life was written before one of them came to be.”  (Ps 139:16).  The nurse simply patted my shoulder and replied, “That brings you comfort, doesn’t it?”  Oh, yes!  I rested in the assurance that none of this took the Lord by surprise.

That was the beginning.  I entered the hospital with a colon.  There was a six-day comma, a pause, a resting and waiting.  We weren’t sure what would happen next.  We weren’t sure what the next ‘phrase’ of life would bring.  This sin-sick world in which we live reminds us that we are not made for this world; heaven is our home.  For me, this means that I will continue this journey as a semicolon.  It’s not the road I would have chosen to walk, but I know that I do not walk alone.

 

Lessons learned from life with less than a colon: Embracing the journey, enduring the process, exulting the Creator; understanding this is not the end.

I’ve been encouraged to write a blog.  Does the world wide web really need another blog?  Eh… probably not.  But I do.  And you maybe do too.

Over the next few  posts, I hope to share the four month journey that led to this point.  I have no doubt that the previous four decades of lessons and griefs and faith will be present in what is shared.

I hope to capture the emotions and challenges and hope that carried me through those early days of this journey.

In all things, I hope to share the reason for my hope, and that is the accomplished life and work of Jesus Christ, His death that bought my freedom and His resurrection that promises eternal life.