Exploring the Jungle —Mary Lott

Mary Lott fills her column with stories about living with cold agglutinin disorder (CAD). All facets of her life are affected, whether at her home overseas in Papua, Indonesia, or her stateside home in Auburn, Alabama. She was overseas in 2018 when she experienced a crisis, prompting an immediate evacuation stateside, where she was diagnosed with CAD and chronic lymphocytic lymphoma. At present, Mary pursues her love of SCUBA diving, although the anemia CAD presents makes it and other strenuous activities challenging. “Exploring the Jungle” will connect with readers to demonstrate how CAD doesn’t have to make life boring.

Being a CAD patient amid the ever-present reliability of constant change

My summer came to an end last week. It is still hot here in Alabama, and the days are still long with daylight. But summer is over. My husband, Mike, has gone back to Indonesia. I remain here in Auburn because my blood work has not yet reached a stable…

What they’re saying in an online support group of CAD patients

In May 2018, I entered the unknown “jungle” of a cold agglutinin disease (CAD), accompanied by what my doctor calls chronic lymphocytic lymphoma. CAD is a rare disease, and in April 2018, I had no understanding of it. Sadly, most people, including some in the medical profession, also…

4 ways I tended to my health while seeking a diagnosis

I carefully pulled myself out of the sunken bathtub and waited a moment before swinging around to stand up. I gripped the sink next to me, pulled up, and caught my breath. “Whoa!” I thought to myself. “That tired me out. Good thing I don’t have to be at work…

4 common questions often asked of those of us living with CAD

A student was waiting at my desk as I walked into the classroom. I smiled as I dropped my books on the desk and looked at her expectantly. She’d been absent the previous day. “Mrs. Lott, did we do anything while I was gone?” That was a stupid question. My…

Outdoor survival skills help me evaluate CAD symptoms

I looked to the right and then to the left, searching in vain for landmarks. I had no clue where we were in the water. I was leading a group of divers and had just committed a gross and dangerous error: I had gotten us lost! We swam on the…

Yes, I’m traveling to the other side of the Earth for CAD treatment

Click! It’s time for a routine checkup. I wait a few minutes for the webpage to load, then add the parameters of my proposed travel. Anxiously, I scan the list of available flights and begin my research. I have certain criteria for the booking; paramount is the cost of the…

Attending college football in the South despite cold agglutinin disease

“Band! A-tennnnn-hut!” I watched for the lift of the drum major’s shoulders because the roar of the crowd — in what’s now called Jordan-Hare Stadium, at Auburn University in Alabama — was too loud for anyone in the clarinet section to hear him count off. I double-time…

Why I question if Enjaymo is right for me

Note: This column describes the author’s own thoughts about Enjaymo (sutimlimab-jome) and experiences with Rituxan (rituximab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Yay! Happy days to come! Such was the reaction of many in the…

Getting diagnosed took patience, perseverance, and pertinacity

It was with great relief that I read the report. My quest for a diagnosis, which turned out to be cold agglutinin disease (CAD), was almost at an end. In September 2016, I was determined to push through the confusion and find someone who could figure…

A holiday all of us with cold agglutinin disease can celebrate

I slather zinc oxide ointment all over my nose, plop on my hat, and jump in the pool. I have been given instructions to rest and get better. My friend said, “Come over whenever you want,” and I intend to take full advantage of that offer. My goals for the…

Should I stay or should I go now (to the doctor)?

It didn’t surprise anyone that on Dec. 11, 2019, I was attending another school band concert, given that my husband, Mike, is the band director. But this particular concert was memorable not because of the music, but for the familiar burning tickle in the back of my throat. It presaged…

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