Light in the Storm

After nine months of suffering in my body, I faced another major, unwanted surgery.  This surgery was anything but elective; it was the only option left in the fight against severe diversion colitis, a rare complication of having an ostomy.  The removal of the remnant colon would seal my fate, making my ostomy permanent.  I battled feelings of disgust over what my surgically deformed body would look like.  I battled feelings of hopelessness, knowing that the surgery was necessary but fearing it would result in further medical complications.  I had known nine months of complications to complications.  Yet, I also believed these truths:

(1) God exists outside of time (“I am the Alpha and the Omega,” says the Lord God, the one who is, and who was, and who is coming, the Almighty.” Revelation 1:8 EHV).

(2) God knows every moment of my life (“all the days ordained for me were written in your book before one of them came to be.” Psalm 139:16 NIV).

(3) Regardless of the outcome, God can and will use these circumstances for my good and for His glory (“…as grace increases, it will overflow to the glory of God…” 2 Corinthians 4:15 EHV).

(4) Though the recovery process was guaranteed to be challenging, the surgery promised to bring resolution to this rapidly deteriorating condition.

The surgery itself, though long, complicated, and delicate, went well.  Through the use of robotic assistance, I was spared the long abdominal incision from sternum to pelvis.  Instead, I received several smaller incisions across my abdomen as the skilled surgeon did the operation, carefully working around my ostomy.  Additionally, there was one larger incision on my back-side through which the diseased colon was removed.

On the day that I was to be discharged from the hospital, I vomited just before the surgeon came to do morning rounds.  The very compassionate doctor tenderly assured us it was best for me to stay one more day.  That afternoon, I spiked a high fever.  A CT scan revealed two abscesses and a second portal vein blood clot.  I would be staying more than one day.

We were so very grateful for that unexpected onset of symptoms earlier, requiring me to stay put.  It was a little reminder that God was present; this was a ray of light in the storm. My hope was anchored to the eternal safety He promised through salvation (“Indeed, we who believe are going to enter His rest.” Hebrews 4:3 EHV).  As complications continued to assail me, I was being overcome by the darkness of the storm that had been raging steadily for more than nine months.  My body, the vessel, was battered and broken.  I began to believe that the storm would not end without me perishing in it, certainly not that day, but eventually.  For despite all the best doctors, the best treatments, the best care, the storm raged on in my body.

With two different antibiotics pumping through my veins, my fever subsided, and as the days passed, I began to gain strength and mobility.  I walked the halls with the bulb from my abdominal drain (placed during surgery) clipped to my hospital gown.  My IV pole kept me steady on my feet as I walked the halls of the ward.

During one walk, I felt a sudden gush down my left leg.  There was no discreet way for me to check on my abdominal drain or my ostomy pouch in the hall, so I turned and headed back to my room to call for a nurse.  My abdominal drain had clogged, and the resulting leak required a complete change of gown, robe, and socks.  After receiving assistance with clean up, I returned to bed.

Within a short time, my fever spiked again.  This made no sense!  I had been improving, but suddenly I was feeling chills and my temperature was rising.  I couldn’t get warm, but my skin was hot to the touch.  The charge nurse came in to help my bedside nurse.  She found that the clog in my drain had not been properly tended to; it was preventing fluid from draining out of my abdomen.  The fluid had been collecting at the site of the abscess throughout the day.  Within thirty minutes of the drain line being cleared, my fever broke, and the collection bulb filled twice as the infected fluid was drawn out of my body through the drain.

After a week on IV antibiotics and tolerating a switch to oral antibiotics, I was discharged home.  The next seven days were challenging, but we also understood that if I had been released a week earlier, my homecoming would have been wrought with many more issues and physical challenges.  Though unplanned, the extra week in the hospital enabled me to gain strength and provided a high level of care as I navigated those early days of healing from surgery.  This was another ray of light in the storm. It was nothing that we could have understood at the time, as my hospital stay lingered.  It was, however, something we understood in hind-sight.  This was evidence of His promise to use all things for our good (“We know that all things work together for the good of those who love God, for those who are called according to His purpose.” Romans 8:28 EHV).

At home, abdominal pain and fever became an increasingly concerning symptom as each day passed.  On my seventh day home, a call to the on-call surgical intern confirmed that I needed to go to the emergency room with an over-night bag packed.  Another CT scan revealed a new abdominal abscess and a third portal vein blood clot.

Upon being admitted to the hospital, I was put on a schedule of IV antibiotics and IV anti-coagulation drugs (blood thinners).  My discouragement was deepening.  I was weary of fighting the battles that raged on in this war to right my abdominal health following the perforation of my colon, now ten months earlier.   There was no end to the fighting.  From my hospital room, there was no end in sight.

The abdominal abscess was in my muscle wall and spread up through the oblique muscle.  The pain was crippling; every movement was agony.  We were told that a drain would be placed in the abdomen once the infection became “organized.”  The two previous abdominal drains I had were placed during surgical procedures; I was told that this one would be placed while I was awake.  I felt nothing but fear and dread.

Three days after being admitted to the hospital, I underwent the procedure to have the drain placed in my side.  My abdomen was cut open and a tube was guided by radiography.  I could not bear to watch the procedure.  As the doctor talked his way through, explaining step by step of what he was doing, I asked him to please not tell me any more.  A very compassionate male nurse stepped close to my ear and began whispering, “He’s almost done…  You’re doing so well…  I’m really proud of you…  You’re going to be okay…  He’s just about finished…  You’re doing great…”  His voice was the calm that I could focus on through a procedure that I hope to never experience again.

A collection bulb was attached to the end of the tube protruding out of my side and clipped to my gown.  After returning to my hospital room, I was overcome with emotion.  My thoughts were drawn to my Savior and the day His side was pierced.  Never more real to me had become the verse, “For we do not have a high priest who is unable to sympathize with our weaknesses.” (Hebrews 4:15 EHV)

As I laid in an empty room with my pierced side, I was again reminded of what Jesus suffered to redeem me (“He gave himself for us, to redeem us…” Titus 2:14 EHV).  The salvation He won for us promises eternal life.  From the cross, Christ promised the criminal hanging beside him, “Today you will be with me in paradise.” (Luke 23:43 EHV)  My thoughts turned more and more toward heaven.  I longed to be free from the prison of my body and to be made whole in heaven.

Paul wrote it so eloquently, “Now we know that if the tent that is our earthly home is destroyed, we have a building from God, an eternal home in heaven… To be sure, while we are in this tent, we groan and are burdened… We know that while we are at home in the body, we are away from the Lord, for we walk by faith, not by sight. But we are confident and would much prefer to be away from the body and at home with the Lord.”  (2 Corinthians 5:1, 4, 6-8 EHV)

Silently, I held these thoughts close.  I had lost all hope for recovery.  The previous ten months had taught me to not trust the best case scenarios the doctors identified, but rather to expect there would be more pain, more complications.  There was always more.  I began to hope that I would die so that my suffering would end.  I held these thoughts, but I did not express them to the nurses who cared for me, to my pastors who sat at my bedside, or to my family who wrote and called and visited.  I wore as brave a face as I could manage, but inside I had given up.  These were my private thoughts.  My only remaining shred of hope was freedom through death.  The promise of heaven was the only remaining light through this storm.

The nursing staff were tasked with teaching me how to manage the cares of flushing the drain three times each day, measuring and recording the amount of fluid collected at regular intervals.

In addition to learning drain flushing cares, I was informed that the anti-coagulation injections that I had endured for 15 terrible days last spring would need to be resumed for 3 months.

I reminded the nurses that I don’t handle bodily fluids and needles well at all.  I tried my best to be a good patient.  Yet I cringed every time I had to flush the abdominal drain; I was completely disgusted by the fluid flowing in and out of my body through the syringe.  I cried when I administered the injections of anti-coagulation medication.  I had learned to cope with ostomy cares, but drains and needles were pushing me to my limit.  My discouragement was becoming a deepening darkness.  I was feeling completely overwhelmed with the schedule of numerous oral medications, injections, and drain flushes in addition to all of my regular cares of ostomy needs and my other long-term medications.  It felt like this all was more than I could manage, and I was drowning in the anxiety of being released from the hospital to do all of these cares on my own.

Not only was I overwhelmed by the responsibility that I was to carry on after discharge, I was still working through the emotional torment of grief over the physical trauma I had routinely experienced through the last ten months.

One night in the hospital, I had ventured into the bathroom, assisted by my nurse.  She gave me privacy while I tended to my task.  I was suddenly assaulted by a low pelvic pain, the same pain that had sent me to Urgent Care ten months earlier.  More distressing than the pain, was the flood of fears that suddenly drowned me.  When the nurse returned to assist me, she found me doubled over, crying. She helped me back to bed and tenderly tucked me in.  She offered to stay with me.  I told her I would prefer to be left alone.  She turned on some gentle instrumental music, turned the lights low, and left the room.  I cried for a long time.

The next morning, a test was run, and I was diagnosed with a urinary tract infection.  There was nothing that needed to be done, I was told, because the antibiotics I was already on would clear up this infection as well.  This caused increased puzzling and further deepening of the darkness I felt.

How could I develop a third blood clot when I was taking anti-coagulation medication?  How could I develop an infection that was treated by the antibiotic I was already receiving?  Despair took hold of my mind.  As complications lead to further complications, compromising my health while I was on medication to address these issues, I was resolved that my physical suffering would not end this side of heaven.

On my fourth day in the hospital, I was told that a sensitivity test was needed to determine which specific antibiotic would treat the infection in my abdominal wall.  I had been on a broad spectrum IV antibiotic, but the doctor needed to know which oral antibiotic could be prescribed for my release home.  I was told that if no oral antibiotic could be determined, they would perform a procedure to place a PICC line, a central catheter in my arm, so that IV antibiotics could continued to be administered at home.

This was too much for me to bear!  In the quiet hours of the night, I cried to God, pleading that something, anything would prevent me from needing a PICC line.  I was ready for Him to take me home because I was very certain that a PICC line would be more than I could cope with.

In the early morning hours, I had a lengthy discussion with my nurse about the procedure of having a PICC line placed.  We discussed pros and cons.  He reassured me that it is quite common for people who have serious, chronic disease to use PICC lines for a time.  He tried his best to quiet my fears and normalize this completely abnormal process.  Though I was grateful for the information and the time my nurse gave me to discuss this, I was more convinced than ever that I had no interest in going on like this.

Eventually I confided to my husband that I was done; I had used up all my fight. I had nothing left to keep going. I did not want to continue battle after battle, fighting complication after complication.  I did not want to deal with abdominal drains, injections, PICC lines, surgeries, unending medical cares.  I told him if another abscess or thrombosis was found, I wanted to sign paperwork to stop all treatment.  What was hard for him was that he could see that I was actually healing from my last surgery, but he understood that I had lost sight of hope that I would have better days ahead. His prayers became very directed for healing and for hope to return.

And then God……

Psalm 135:6, “The Lord does whatever He pleases in the heavens and on the earth…” (EHV)

Revelation 4:11, ““Worthy are You, our Lord and God, to receive glory and honor and power, for You created all things, and by Your will they existed and were created.” (ESV)

1 Chronicles 29:12, “…You rule over all. In Your hand are power and might, and in Your hand it is to make great and to give strength to all.” (ESV)

Psalm 121:2, “My help comes from the Lordwho made heaven and earth.”  (ESV)

Matthew 19:26, “…with God all things are possible.” (EHV)

After another week in the hospital, I was released home without a PICC line!  I truly believe that God intervened.  Originally told that the bacteria was resistant to the oral antibiotic the surgeon wanted to prescribe, the forty-eight hour sensitivity test mysteriously revealed the bacteria could be treated by the oral antibiotic!  We were shocked but delighted!  This was a beacon of hope shining in the midst of this storm!

Psalm 66:16-17, 19-20, “ …let me tell you what [God] has done for me. I cried out to Him with my mouth…  God has surely listened and has heard my prayer. Praise be to God…” (NIV)

By the time I was eight weeks post-op, renewed hope had returned.  Though I still had a great deal of recovery left, I was beginning to experience what the doctors had been trying to tell me all along.  Recovery felt as though it was just beginning, the recovery promised from my ostomy surgery eleven months earlier.

Each day has its ups and downs.  As of this writing, I am just eleven weeks post-op, yet I feel better than I have for the previous eleven months!  There are so many lessons, so many gems, so many treasures that I take out of the past year’s experiences.

For the first time in a long time, I can look expectantly ahead, hopeful of what God has in store for my life.

“For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.”  Ephesians 2:10 (EHV)

Christ was always my light in the storm.


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

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.