Living and Praying In “Some Hotel”

By on September 19, 2012

By Elizabeth A. Havey –

My husband and I are in Jacksonville, Florida, a city of skyscrapers and treed neighborhoods built near the lake-like St. John’s River and the magnificent Atlantic Ocean. We are staying in a Marriott Hotel with a pool and lounging chairs scattered around it, lush mounds of purple and lime coleus everywhere.

But this is not a holiday. We are here because the Mayo Clinic is located right across the street —a huge campus with research facilities, hospital and outpatient care. We are here to benefit from the knowledge and help of a doctor new to us, one who has researched and developed an innovative drug that hopefully can help us.

My husband has a chronic form of leukemia, Chronic Lymphocytic Leukemia. This trip was arranged in three hours after we looked at current labs and talked to a medical advocate and friend.  We wanted her approval of all we were currently doing to fight my husband’s disease as he was out of remission.

Like a tsunami coming at us, our friend made it clear: didn’t we see that the treatment wasn’t working? We were wasting valuable time.  We had to do something RIGHT AWAY. Our ten-year-journey-fight with CLL might be coming to an end if we didn’t act now.

Didn’t we realize—the disease was not just affecting white blood cells, but every blood factor that bone marrow furnishes—factors that fight infection, clot and stop bleeding, and supply oxygen to every cell in the body so normal physical activity can occur. We were in deep trouble.

The conversation was three-way. I was to take notes.

I dropped my pen. My heart was thumping in my chest, my pulse racing. It was 3:00 pm on a Friday afternoon and I was hearing that my husband was critical. But even so, I hesitated. We live in the Midwest. Suddenly, I spoke up: Couldn’t we just drive to the Mayo Clinic in Minnesota and get help there? Our friend fired back rapidly. She knew this doctor at the Florida Mayo. He had pioneered this drug. The situation was dire and we had to commit to more than just one visit. We’d probably be in Florida indefinitely. Why would I even think of going somewhere else?

I was scared. That’s why. I didn’t say anything, but I could hear John agreeing to her plan. I knew his hands were shaking as he wrote down the doctor’s number. He was to call this man in 30 minutes. If the doctor took us on, it was a go. The rest was up to us.

The call ended. I looked around my family room with its autumn-colored walls and the golden mum plant I had just purchased. Couldn’t take any of that with me. Because of the drought, all summer I had worried about my garden and my lawn, contemplated what I would do to bring things back when cooler temps and damp nights revived the land. Now I wouldn’t be around to make it happen. Had I fussed too much about my garden, forgetting to be more focused on my husband’s health? If I had, that was changing right now.

Hours later we had a plane reservation and a hotel reservation. Most importantly, we had an appointment four days later with the doctor. When we called our friend back to thank her for connecting us with this physician and for her amazing advocacy, she said firmly: “I’m proud of you. Many people dither. If you dither, well—that’s how we lose people.”

We weren’t going to lose my husband. Not if there was ANYTHING that I could do about it.

We’ve been in Florida two weeks now and often a musical phrase moves through my memory; it’s from Dan Fogelberg’s song, Leader of the Band… “And I’m in Colorado when I’m not in some hotel…” But I am in some hotel twenty-four/seven. With my husband.

The uniqueness wore off very soon. We have eaten everything on the hotel menu more than twice. We have taken to eating some meals in our room to add variety and save money. We take two walks a day around the ponds and gardens on the Mayo Campus. We now stream movies to our computer. We read books all the time, and two newspapers a day. I write. What breaks up our day?  DOCTOR and LAB appointments. But that’s why we are here—to take the drug, to see how his labs are improving, to hug the doctor and say thank you (I do!) and to hold each other as the Florida sun goes down and we face another day in some hotel. 

But I’m no saint during all of this. I call my landline to feel some contentment—our house is still standing, waiting for us. Sometimes at night when he’s asleep I let tears wash my eyes. I miss my bright green morning coffee mug, my pillow, the birds in the oak trees every morning and the crickets and tree frogs every night. I miss cooking and cleaning! I even miss picking up sticks in my yard—which means being physically useful. I know I am useful in other ways here—but when you are wrenched out of your routine, you have to reevaluate everything in the hours as they slowly tick by.

Please know that I welcome your comments and hope that if anyone is experiencing something similar that they will share. Living [email protected] always means taking the challenge, reworking the routine and diving into the new. With my husband’s love, the support of friends and family and God’s blessings we will be home soon, home in a physical sense. But I think we all know that when love binds us to each other—we are always home. No matter if we are—in some hotel.  

Beth would love you to visit her blog: Boomer Highway- http://boomerhighway.org/

About Beth Havey

Beth Havey is a Boomer, member of the sandwich generation, passionate about health and the snags in the fabric of life that affect our children and grandchildren. Help me slow life down on BOOMER HIGHWAY www.boomerhighway.org. Be sure to stop and to chat with her.

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Living and Praying In “Some Hotel”