The dreaded cancer diagnosis. My Non Hodgkins Lymphoma story

When I was diagnosed in 2013, I was devastated beyond anything I could’ve imagined. My future just disappeared. I didn’t feel well, I was losing weight & strength, and I figured that I only had months to live. For a person who is usually an optimist, switching to the world of pessimism was a downer.

My wife, Shirley, went on-line and found a document about non-Hodgkins lymphoma but I refused to read it. Fortunately, my family stepped in and insisted that I go to M. D. Anderson (MDA). Shirley called & made an appointment for me.

Ten days later, when I saw the lymphoma specialist at MDA, he took an hour to examine me and talk about the disease. He told us that they could not cure my cancer but they could manage it.

Finally, those were words of hope for me.

More tests were needed to better define my disease and to decide when treatment would be needed and what the appropriate treatment would be.During this time, I began to look for humor in life again.

At MDA, I looked at the names of the doctors in the department & the head of the department was Dr. Kwak …. I laughed. Then I looked down the list & saw Dr. Finale. Oh boy, this is going to be an adventure. One day, I walked around MDA with my jeans ripped in the back, and I laughed because that had no importance compared to being at MDA.

Then in January of 2014, we returned to MDA to begin my treatment. Once I began treatment, I was laid low for about a month, and my weight loss resumed. We stayed at Shirley’s aunt’s house for a month, and Brett put up my ham radio wire antenna, and I set up the radio on a night stand by the bed so I could listen & even talk to my friends if I felt like it. Most of my waking hours were spent in bed but I could listen to my radio.

The doctor reviewed the treatment options for me, and basically gave me a choice of chemotherapy or one of the new novel treatments. I opted for the novel treatment (non-chemo). It made me feel lousy but it did not alter my DNA like chemo does.

After 3 months, in April 2014 the doctor told me that the treatment was not working, however, two months earlier in February 2014, a new drug was FDA approved and would be a good option for me. I’ve now been on that drug for over 7 years and although I am probably not in remission, the drug continues to control my cancer. My blood counts are normal, and my lymph nodes are normal.

The most pressing side effect that I have is fatigue. That is a symptom of the lymphoma & also a side-effect of the cancer medicine I take every day. I find the comments about dealing with your grief, accepting your situation, living for the moment, saying “no” when it is appropriate, getting medical help from a specialist, spending more time with family, being grateful, smiling more, exercising more to all be peripheral to faith in God.

Where was God in all of this? Where was my hope?

I was encouraged by so many who reached out to me and told me that they were praying for me. The treatment that was ahead was scary to me. Bone marrow biopsies, IV infusions, CAT scans, drugs that could make me sick with nausea plus other side effects all loomed ahead of me.

Quite often, when I would get my blood draw which was normally the first thing on the list when I would visit M. D. Anderson, the phlebotomist would say, “God bless you.” One technician from Egypt had her Bible laying on her desk. Those words of blessing meant more to me at those particular times than ever before in my life. They gave me confidence that the Lord was walking with me.

Scriptures often came to mind that gave me assurance – “I will never leave you or forsake you. Deut 31:8 & Hebrews 13:5” From Psalm 139 I found verses that assure me that God goes before me and behind me – He surrounds me.

For a cancer patient, it is often scary as we wait to hear from the doctor what the results of our medical tests are knowing that they may be words of life or death. But then I am reassured knowing that none of this is a surprise to the Lord. He knew the path of my life before I was ever born, and I continue to trust Him and thank Him for guiding my path.

Often I found myself singing softly or humming, “He leadeth me O blessed thought” or “Moment by moment I’m kept in His love” – great hymns of the faith. For each of us, our days are numbered and we will all eventually live out our life be it short or long. I do have hope that the Lord guides my life, and He has a heavenly home for me when my days are over.

Lynn Bailey was diagnosed in 2013 with a type of Non Hodkins Lymphoma (NHL) called small lymphocytic lymphoma (SLL) and has been treated with ibrutinib since 2014. More by Lynn: