Settling In

I feel as tired as ever most of the time, but there is so much to do around our new house, I don’t really have time to think about it.

As of today, I have visited the Clearview Cancer Center (CCI) three times. It is an easy drive into Huntsville from Falkville—only about five minutes longer than my old drive from Navarre to Pensacola.

Huntsville is a beautiful city, and the most recognizable landmark we pass is the U.S. Space & Rocket Center, affiliated with the Smithsonian and serving as the official visitor center for NASA’s Marshall Space Flight Center. John even worked there as a tour guide for about a year back in 1992.

My first visit was July 2nd. The facility is sleek and modern, similar in character to M.D. Anderson. It is organized in a very logical way, with a single reception area where pleasant staff members greet patients, tap your information into their computers, and hand you a pager that will signal when it’s your turn to be seen.

My first stop was the lab where I had blood drawn. I didn’t have to wait long, and two friendly phlebotomists chatted with me about where I had lived in Florida and what brought me to northern Alabama.

Next, I went to the waiting area in front of the door where my doctor’s name was posted along with several others. This time my wait was longer.

It seems like wait times have decreased over the years as technology processes information faster and more efficiently. On the rare occasion when I wait longer than anticipated, I am reminded of how fortunate we are—and how impatient we can be.

When my pager finally signaled my turn, a nurse guided me to an exam room where she took my vitals and told me the doctor would be in shortly.

Dr. John Wapels, Oncologist, with more than 20 years of experience, specializes in bone marrow transplants. He was in his late 50’s or early 60’s, which I found mildly reassuring. I was accustomed to the 30-something-year-old doctors and PA’s. He asked me several questions about my past “lines of therapy.” In patients like me with relapsed myeloma, each treatment regimen is considered a line of therapy. It was after four previous lines that I underwent the CAR-T therapy at M.D. Anderson last September. Dr. Wapels discussed the next line of treatment should I relapse again, which will likely involve something called bispecific antibodies. I plan to learn more about this treatment before I need it.

He also went over the results of my blood work. In addition to low immunoglobulin markers, which indicate a higher susceptibility to infections, he told me my iron was deficient and I would need an infusion. The immunoglobulin problem called for an infusion as well—one that I was familiar with because they were routine in the days and months following my CAR-T therapy. The infusions were scheduled one week apart with the iron being the first one on July 9th.

When I returned for the iron infusion, which I’d never had before, the nurse explained it would start very slowly with a small dose, followed by a 30-minute wait to see if I had any reactions. If there were none, they would gradually increase to a full flow with the total time for the infusion taking about two hours.

I’m one of those lucky people who has never had an adverse reaction to any medication, including chemotherapy—other than losing my hair, that is. I know it’s a blessing because I’ve known individuals whose bodies have had unpredictable and often harmful reactions to medications—or no reaction at all. With multiple myeloma, the cancer adapts, so new therapies are critical to a patient’s survival and longevity. Thankfully, they are being developed at a greater pace than ever before.

John was with me for the iron infusion, and when the nurse brought the bag of liquid iron, his face looked suddenly surprised. I turned to look at the IV pole where the bag was hanging. It was filled with a dark red liquid that looked like blood. Curious about the deep red color, I later learned that many intravenous iron preparations naturally have that appearance because of the way the iron is formulated—not because they contain blood.

That made perfect sense. When I asked Dr. Wapels during my visit what causes low iron, he told me I could have a bleeding ulcer or some other bleeding going on somewhere. This led to a discussion about my last colonoscopy and a referral to a gastroenterologist so I could get it done.

“A colonoscopy might reveal something that might be causing the low iron,” he explained.

I will see Dr. Blake Spindler, a colon and rectal surgeon, on Monday, August 3rd, for an evaluation and to schedule a colonoscopy.

Oh, joy.

The only unusual bleeding I’ve been aware of has been excessive bruising, particularly on my legs. I have had a couple of doozies, and I have no idea where they came from. It doesn’t take much effort these days. I’ve been inclined to cover them with cropped pants, they’re so unsightly.

Although Dr. Wapels told me I should feel much better within a few days after the iron infusion, I haven’t really felt different. I feel as tired as ever most of the time, but there is so much to do around our new house, I don’t really have time to think about it. I think I’ve only taken two naps since we moved.

The IVIg infusion was relaxing—mostly because of the liquid Benedryl I received prior to the infusion. Within 30 minutes, I felt as limp and heavy as a wet rug. My laptop, which I’d brought to compose this medical update, sat closed on the tray next to my recliner while I drifted off, hoping I wouldn’t embarrass myself by snoring like a lumberjack. I wouldn’t be the first, I thought.

About three hours later and feeling more energetic after my nap, I headed back to Falkville.

Every day remains a gift, and I am reminded not to waste the ordinary moments. They are often the sweetest ones.

Our first remodeling job begins this coming week, and I am filled with anticipation. I need to take pictures over the next few days to compare with the completed work, which will take about three weeks. Of course, I will try to write to keep you updated on everything. For now, thank you as always for your support and prayers.

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