When Cancer Strikes: The Silver Lining

by Karen JonesAugust 10, 2021View more posts from Karen Jones

Several weeks ago I made a promise to God – to serve Him and to share my story in order to glorify His name. I prayed that He would present me with opportunities to help others who are struggling.

I want to use my past and current trials to reach others who are going through life altering – life shattering – experiences. My goal is to help those who need a sip of water, a safe place to rest, and a little glimmer of hope in the often-debilitating darkness of despair.

God created me as an eternal optimist, and I am ever so grateful. My natural reaction to disappointment and difficult experiences is to find the “silver-lining”. To search for the rainbow amidst the storm.

But even I have times of complete despair. Sometimes I cry myself to sleep. Sometimes my body, mind, and heart hurt so much that I cannot get out of bed.

Yet even when fear has its deathly grip on my heart and my body, I know that all I have to do is cry out to God. And every single time He will be there to pull me out of the darkness. He has proven this time and again by surrounding me with loved ones who fight tooth-and-nail for me, no matter their personal cost.

My “medical journey” began back in 2002 during my sophomore year in college. Up until then I was an active, energetic, young woman with an exciting future ahead! Mid-semester I began feeling incredibly tired and was having trouble with my memory.

After reviewing my blood work, the campus clinic doctor referred me to M.D. Anderson, where my mom just happened to work as an administrative assistant. There, they diagnosed me with Chronic Epstein Barr Disease.

Over the following 15 years I tried every treatment, both traditional and non-traditional, to overcome the constant lack of energy, memory problems and impaired immune system. I would feel better for serval months, but every time I got a simple bug I ended up in the hospital.

Not a single doctor could figure out why.

Amazingly, in 2011 I married my husband, who just happened to become a physical therapist a few years after we started dating, and we had a beautiful, healthy baby girl in April of 2014.

Life was wonderful until about three years later. One afternoon in July of 2017, my husband came home to find me barely conscious, laying on the floor of our bedroom. I had been acting depressed for a couple of weeks prior, so he took me to the local psychiatric hospital. They told him that they needed a referral from a medical doctor to accept me, so he took me to the nearby hospital.

There I was diagnosed with Acute Myeloid Leukemia. But before I could start chemo, they had to get rid of my 104-degree fever, which took serval days. I also had to have a shunt placed into my skull to relieve pressure that was being built up due to hydrocephalus.

My oncologist, who just happened to have transferred from a renowned hospital in Chicago, had a hunch that I had a very rare hereditary disease called MonoMAC Syndrome. After reading through all my medical history he recognized the symptoms and contacted his partner in Chicago, who just happened to be “THE MonoMAC guru”.

Dr. R had my blood tested for the specific markers, but their lab was only able to test for 5 out of the 7 markers – all of which came back negative. But thankfully, he was not deterred. He knew I had it and he was going to prove it.

He referred me to M.D. Anderson Cancer Center in Houston, where they tested my blood for all seven of the markers. They confirmed that I did have MonoMAC syndrome. My husband I were so relieved. Finally, we had a specific enemy to attack!!

On February 12, 2018, I had a bone marrow transplant. My oldest brother just happened to be a perfect match. And what takes a typical donor three sessions to collect enough bone marrow to use, took him only one!

After I recovered from the transplant, everything was great for about a year. I was getting stronger and healthier every day. But then I got a cold. And a few months later I got pneumonia. Then, RSV. My new immune system was not strong enough yet to fully recover from one attack before another one hit.

So, it did what it was made to do – rid my body of what was causing all the infections… my lungs. This is called Graph vs Host Disease and the treatment for is called Photopheresis, which I started a year and half ago. It works similar to the way dialysis works for diabetics.

While I was driving to one of these four hour long treatments, I was praying – no, pleading – to God to heal me. At that moment, a wide rainbow just happened to stretch across the cloudy the sky, and “Praise You in This Storm” by Casting Crowns just happened to come on the radio. I knew this was a sign that God heard my prayer and would answer it.

Skipping ahead to today, I am now on the double lung transplant list at Methodist hospital in Houston. After a lung transplant, most patients live for 2-5 years. Knowing that you are going to die sooner rather than later is a sobering fact.

But I consider it a blessing as well. I now have an urgency to make the most of the precious time that I have left on this Earth. No more procrastinating and excuses.

Every morning when I wake up, my first thought is to thank God for allowing me to wake up in my own bed. I try to read the Bible and sit outside while the sun rises, breathing in the fresh air and soaking in the sunshine.

I eat as healthy as I can, I take my many medications several times a day, exercise and do yoga most days. (Being married to a personal trainer is such a blessing!) I have a psychiatrist, a Stephen Minister AND an Imerman Angel, all who have become good friends of mine and blessing to my family. I also have amazingly dedicated family, friends and a wonderful church praying for me daily.

I am truly blessed.

This is part of a sermon that my pastor gave recently that really gave me comfort. I hope that it will do the same for you.

“Grief is a universal experience. Life includes losses and death. But you and I know that death is not the end. And even as we acknowledge that, death is still a loss for those of us who remain amongst the living.

“Grief is also a process. It is working through to the other side of our loss. We don’t just get over it, we learn to live with it. To learn from it. And let me tell you, it is work. But it is good and healthy work.

“Don’t simply survive – but thrive.”

———

The Diary of Anne Frank

“The best remedy for those who are afraid, lonely, or unhappy is to go outside, somewhere where they can be quite alone with the heaven, nature, and God. Because only then does one feel that all is as it should be and that God wishes to see people happy, amidst the simple beauty of Nature. As long as this exists, and it certainly always will, I know that then there will always be comfort for every sorrow, whatever the circumstances may be. And I firmly believe that nature brings solace in all troubles.”

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2 Comments

  • Amanda Charron says:

    Thank you for sharing, Karen. This was a pleasure to read and served as a most encouraging reminder to me about some things I think God may be trying to tell me, but that I’ve been stubbornly ignoring.
    Rainbows were very special to me during my treatment. I saw three in six months (more than I ever had in that short of a time frame) and always on days when I pleaded and needed a reminder sign of hope the most.
    One evening, I was cleaning my son’s room while feeling very distressed and pleading to God in my mind and heart, when one of his 100’s of books fell off the shelf. I retrieved it to find it open to a page with a rainbow and a most perfect bible verse for the moment I was having. 🙂

    Stay focused on your unwavering faith and God’s plan for you.

    My best,
    Amanda

  • Gina says:

    Thank you for your testimony Karen! It was so beautiful to read. Many blessings to you and your beautiful family!

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