Permission Granted…

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(Note:  This post is more of an update, a testimony, or a script of my thought process than one of my typical posts but I still wanted to share.)

The Heaven’s declare the glory of God, the skies proclaim the work of His hands.

(Psalms 19:1)

I remembered the grueling day at the research hospital, shortly after my stage 4 diagnosis when I hadn’t yet grasped that I had a terminal illness. First, I saw a woman in charge of the financial end of clinical trials.  She asked if I’d consider foregoing traditional treatments to participate in a clinical trial because there wasn’t much hope for me. Once the cancer metastasized, there was no longer a cure and I could do something for the greater good and help the women coming behind me.  I was 42 at the time. I was diagnosed at 39.

Then, I saw the first doctor. She was distant and cold. I talked to her about my treatment. I was excited that my doctor prescribed a new oral chemo.  She told me if the medication worked, it would only work for a short while.  I swallowed that comment and said I was happy I would keep my hair because it would be easier on my kids.  With condescending pity in her eyes, she said I would eventually be on IV chemo and that I would lose my hair, “you know, in the end”.  I choked back tears and kept quiet.  When she finished the exam, she told me to get dressed and wait for the next doctor.  Before she left, I asked her about my prognosis. She took a deep breath, and without emotion, said that I would “be gone” in about 18 to 24 months.  She tucked my file under her arm and walked out.  I felt the air get sucked out of the room and out of my lungs as she shut the door behind her.  I didn’t know I was crying until I saw the tear drops land on my clothes as I changed.

My husband was allowed to join me and the next doctor came into the room.  She explained that stage 4 was incurable so the plan was to maintain quality of life as long as possible. A treatment plan would work for a small amount of time. When my cancer progressed, I would have surgery or radiation and my medication would change.  This cycle would continue until I succumbed to other medical issues caused by treatment or until I was out of options.  Then, I would be transferred to hospice until I died. She had no available clinical trials for me but recommended I follow my current doctor’s treatment plan.  She told me that my prognosis was about 2, maybe 3 years and cautioned me to use my time wisely.  Then she closed my file, wished me luck, and walked out.

My husband and I walked out of the room, out of the office, through the hospital and to the parking garage to the car.  During what felt like a ten-mile walk, we didn’t look at each other or speak a word.  When I got in the car and buckled my seat belt, I melted into a puddle on the front seat.  The words of the doctors echoed inside my head.

the greater good … terminal … 18 months … in the end 

I went to that doctor because my doctor referred me for a second opinion and to see if there were clinical trials available for me. I knew his intentions were good but my visit was devastating. I thought about all those other patients sitting in the waiting room.  Was this what they had to endure at every appointment, at every treatment? I knew that after I had a good cry, I was going back to see my doctor who would give me hope.  Did they know there was hope out there?  Did they know there were doctors that cared about their patients, who filled their patients’ hearts with hope and not dread? How could someone fight this disease with little support; manage the debilitating treatments, the painful side effects, the emotional strain without compassion; find the strength to keep going when they weren’t given the chance of a future?  How could someone deal with daily struggles without hope?

Without God?

On my last two scans, there was activity on my right femur and hip area.  The first time, the doctor called it ‘activity’.  The second time, he called it ‘increased activity’. He checked with the radiologists who said it was not cancer, but he was going to monitor it.  I usually had my petscans every 6 months but my next scan was in 4 months because with the increased activity, my doctor felt we should scan sooner.

The next two months, my tumor markers increased.  My rise in tumor markers was in line with the increased activity shown on my scan and increased pain I was having in that area.  I was nervous and I began to prepare myself for finding out that my cancer was progressing. I had been on the current treatment for 18 cycles.  Cancer finds a way around the medications eventually.  Last month, I held my breath when my tumor marker results came.   Would my tumor markers increase again?  Imagine my relief when I looked at my results and saw that my tumor markers decreased and were back within the normal range!

Tumor markers were only a part of the puzzle.  The scan told the real story.  My doctor scheduled the scan. I noticed more pain in my hip area over the last few months.  It bothered me when I stood up, when I sat for too long, and I was more aware of the pain, sitting still.  For a cancer patient, that was usually not a good sign.  I prepared myself for this to be ‘that scan’ that showed progression, propelling me into a whirlwind of treatment, new side effects, and the reminder that my cancer was never really going away.  I was more nervous about this petscan than ever before.  I prayed. I asked my friends to pray.  I had the scan and then waited for the results.

Tha night, I went out to dinner with my family.  It passed the time and gave me something else to focus on rather than waiting for my phone to ring.  I wasn’t sure when he would call.   Just as we were working on that ridiculously large plate of cheese fries, my phone lit up.  It was my doctor.  I ran out of the restaurant, not wanting to take the call in front of my family.  I walked outside to see a dark, cloudy sky overhead.  To escape the loud music playing from the speakers in front, I walked around the building to an empty bench.  I noticed the sun was shining on it.  I looked up and saw a patch of blue sky poking out from behind the thick clouds and the sunlight was shining through, sending rays down to that bench.

I held my breath as my doctor told me he got my scans and wanted to call right away.  I closed my eyes, felt that sun on my face, and held on to the bench. I had to ask him to repeat himself.

He said my scans looked great. No visible signs of cancer.  No progression.  Hallelujah!

The activity in my femur was stable.  I mentioned that I wished it was gone. He stopped me and said stable was best. If the area had gone away or gotten worse, he would have been inclined to think it was cancer; but since it was stable, he was sure it was arthritis, inflammation, or joint issues caused by my medications.

I sat back on that bench with relief and felt the sun warm my face. He admitted he was worried about this scan with the activity and increase in symptoms, but he couldn’t have been happier with the results.  My mind flashed back to the day in that office…

the greater good … terminal … 18 months … in the end 

Just as those words whispered in my ears, my doctor said he was excited I was proving that doctor wrong and asked if I remembered when the doctor told me that I would only make it another 18 months.  Yes, I remembered.  He was hopeful I would be stable for a long time.

There was that word again.

Hope.

According to statistics, I shouldn’t be living ‘normally’ right now.  I should be on a second or third round of treatment. I should be on IV chemo and long since said goodbye to my hair. According to that awful doctor, I shouldn’t even be here.

My prognosis wasn’t good.  The statistics weren’t encouraging.  But those research studies, those numbers, those doctors … they didn’t have a say.  They could pour over my charts and review research studies all day long.  They could dive deep into the science side of my case but their worldly knowledge was no match for God. I was not discounting the research or the work of those in the medical field.  They knew their stuff.  But they weren’t God. They could call these inexplicable medical occurrences ‘mysteries’ or ‘inconsistencies’; but I chose to call them ‘miracles’.

I considered my own circumstance a ‘miracle’ and firmly believed that God’s hands were all over my medical file.  When I was prescribed a medication to prepare my body for the chemo protocol; I was given a list of side effects I may suffer.  I never had any of them.  When they said I would have to wait months for the medications to work, they were shocked when the medication worked the first month.  When they said I could expect skin irritation from radiation to my shoulder, especially since it was my second round of radiation to the same general area, they were stunned when I had no skin irritation at all.  When my family was stricken with a very contagious virus last fall, my red and white blood cells were dangerously low and I was susceptible to infection; I never got sick.

God protected me.  God shielded me from those harsh side effects, the virus, and the progression.  God allowed me to spend more time with my family.  My heart ached for my fellow patients who endured so much pain.  It was difficult for me to wrap my head around that.  Why was I okay?  Why did I get good news on my scan when a friend of mine just found out her cancer spread?  Even though I got the best news ever, I can’t say that I wasn’t struggling with that.  Why was I okay when others weren’t?

Then, just as my thoughts began to spiral out of control, I talked with a friend and then stepped back, remembering that God’s plan was never going to make sense to me.  I only saw a small piece of a big picture.  It was not my responsibility to figure it out.  All I had to do was walk the path God laid out in front of me.  When I lifted that weight from my shoulders, my heart and mind filled with peace.

Since my diagnosis, I had ideas and goals.  Big ones….but something still held me back.  I was afraid to start something I may not finish.  I was afraid to dive in … all in. I was still hovering at the water’s edge, just dipping in my toes.  What if I couldn’t finish what I started? What if I got so sick that I couldn’t give it my all? I had to let that go and I did … right there on that bench as the sun shined on me like a spotlight.

When I received that good news, something inside me changed.  I felt like God was telling me it was going to be alright and that I should be open to opportunities that He set before me. I didn’t have to fear taking a leap. I was here for a reason.  I may not know that reason; but it didn’t matter.  God had a plan for me.  I had to trust in that. God was asking something of me.  I wasn’t sure what it was yet but I was going to be ready for it when it came.

In the meantime, I was going to praise God for his mercy.  God worked miracles in my life. Maybe someone was struggling with their faith.  Maybe someone was wondering if God was really there.  Maybe someone thought God didn’t care about them.  Maybe those people might open their eyes and open their hearts to Him if they heard how God worked in my life and maybe that could help in some way.

I was still here when a doctor told me I wouldn’t be. God had a purpose in everything He did.  I never signed up to get cancer but it was part of my story.  From the beginning, I refused to spend the time I had left being miserable, angry, or bitter.  How could I when God was always there to shine a light for me when I was lost in the dark? God brightened my path every step of the way. Now, I wanted to shine His light so others could see in their dark and I wasn’t going to hold back.

Not everyone had cancer but everyone had something.  I’ve learned through my experience that when I found myself lost in the dark, all I had to do was reach out to Him and He found me…

it may have been in the middle of the night …

or on a sun-soaked bench in the middle of a cloudy day.

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Let your light shine before others, that they may see your good deeds and glorify your Father in Heaven.  (Matthew 5:16)

Author: Jennifer Lilley Collins

I'm a Mom, wife, daughter, and friend navigating life with metastatic breast cancer while finding joy in the everyday and spreading hope, love, and inspiration along the way.

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