Sometimes I don’t have answers. Sometimes I don’t know what questions to ask. Monday, 19 April, was one of those days.
It started off with a bang—literally. Kohlson got himself up early so he could drive me into Pensacola. Last week he accompanied me to an appointment where he was able to meet Dr. Joudeh and even visited the infusion suite, something that was important to me so he would be able to envision where I was when we talked on the phone or I texted him about an appointment at the medical center. I also wanted him to be acquainted with Dr. Joudeh and vice versa. Monday’s trip would be a drop-off and pick-up only, since my Darzalex infusion would last several hours. I was again running a little late, but no more than 5 or 10 minutes as we headed east towards Highway 87. We had just turned north onto 87 and gone just far enough for Kohlson to begin cruising at the speed limit of 45 mph when we heard a loud pop from what sounded like the driver rear tire. Both of us have experienced blowouts, and we knew immediately that’s not what this was; we just knew it didn’t sound good.
“What did we hit?” I asked.
Kohlson was already looking into the side mirror and then into the rear-view mirror. “I don’t see anything,” he said. “I don’t know what that was.”
“Well, if there’s a problem, the TPMS monitor will tell us soon,” I said.
For anyone who may be unfamiliar with the acronym, it stands for “tire pressure monitoring system.” I learned about it—and all things tire and battery and oil change related—when I took the position of Auto Care Center Manager at the Gulf Breeze Walmart several years ago. I attended special training for the position at the Home Office, and I have to admit it was one of the most challenging classes I’ve ever taken. I managed to make a passing score on the test, although it wasn’t by much. Most of my learning was on-the-job, and I appreciate the value of it to this day.
As we crossed into the Eglin AFB Reservation area, we picked up speed for the approximately 20-mile stretch to Interstate 10. The reservation is a 250,000-acre area that offers conditional access by permit to public recreation including “deer, turkey and feral hog hunting; mobility impaired and youth Special Opportunity Hunts; fishing Eglin's 21 ponds; primitive camping; canoeing scenic waters; mountain biking in the Timberlake Recreation Area; and hiking the Florida National Scenic Trail.” (1) John and I both hold permits and most often visit the reservation when he takes his boxer, Brodie, to exercise.
We had driven about 10 minutes since hearing the pop when Kohlson calmly said, “Mom, the TPMS monitor just came on.”
Great. I thought. I was already a little late; now I would be really late. “We need to find a place to pull over,” I told him, with more than a little urgency in my voice.
The speed limit on 87 is 65 mph, but since the completion of the widening of the roadway to a four-lane divided highway in 2013, people routinely drive 75 to 80 mph, making it potentially treacherous. Only a few of the entrances to the reservation have exit lanes, and to his credit, Kohlson was intent on finding a safe way to exit the speedway. He decided to take advantage of an inside exit lane to turn back south where we had passed a wide exit lane on that side that we could use to enter the reservation and examine the tire.
Once we were off the highway and safely on the side of the road on the reservation, I got out and walked around to the driver rear tire where I thought the loud pop we’d heard had originated. Kohlson slowly rolled the car forward as I knelt down to examine the tire. Within seconds, I could hear the hiss of escaping air and saw what looked like a nail right in the middle of the tread.
“I found it!” I shouted.
In the Army, Kohlson is trained to repair and maintain Blackhawk helicopters, so I knew changing a tire would be a walk in the park in comparison. My anxiety level is always less when he’s close by under any circumstances, and on this occasion, he truly saved the day. He immediately went to work changing the tire all the while regaling me with tales of some of the bolts
he’d torqued on equipment he worked on while he was in Europe. As he talked, I silently thanked God that he was with me that morning. I know how to change a tire and proudly did it myself—more than 15 years ago. On that occasion, I had returned to the airport in Northwest Arkansas from a business trip and found my car sitting in the parking lot with a flat. I was a lot younger and stronger then, however. When I watched Kohlson lift the full-sized spare out of the trunk and easily heft it onto the axle, I doubted I would have been able to handle the 50- to 60-pound weight of it.
It probably took all of 10 minutes for him to finish and put everything back neatly in the trunk, and we were once again on our way.
By the way, I am including this screen shot from the text Kohlson sent to me about a feature of my new car he discovered later that day when he took it to get the flat fixed:
There are three women I have not previously mentioned who are among the unsung heroes at The Woodlands Medical Specialists. Kelly, Terri, and Sandi warmly greet and check in patients who are there for a variety of reasons, including lab work, doctor appointments, and infusion sessions treating many different types of cancers. Like the nurses and techs who also deal directly with patients, they are trained to both gather information from and provide information to cancer patients and their loved ones, and that can often be challenging. Sometimes It’s because a patient is elderly and hearing-impaired or because he or she is weak and weary from a difficult treatment regimen. Regardless of the situation, these administrators are friendly, courteous, and professional, especially when a patient makes a mistake on their schedule. I’ve done it once, and fortunately for all of us, I wasn’t taking Prednisone at the time.
On that occasion, I arrived and waited my turn to approach the wide desk in front of the Dr. James A. Patton Infusion Suite for my appointment. Sandi, who had joined the team since I started seeing Dr. Joudeh, was the first to be available and invited me to step up to the plexiglass divider.
“What are we seeing you for today?” she asked. To tell you the truth, I can’t remember what I thought the appointment was for that day—most likely it was chemo—but as she tapped away at her computer, she furrowed her eyebrows ever so slightly in a look of confusion and said, “You don’t have an appointment today. It’s…” and she told me when I was actually supposed to be there.
Now it was my turn to be confused, but I had watched these women deal with enough patients to know that in 99 cases out of 100, the customer was definitely not right. In my head, a mildly aggravated, Great, Kelly, thought went through my brain. You drove all the way from Navarre to Pensacola on the wrong dang day!
So, I did the only reasonable thing I could do in this situation. I smiled at the women behind the desk and said, “I just wanted to come see you guys!”
On Monday,19 April, I was definitely supposed to be there, but for the second time in six months, I was 30 minutes late—not a bad record, I guess, but I hate being late. I was feeling more anxious than usual due to the flat tire, but this provided yet another opportunity for one of the infusion nurses to demonstrate her special essence of character that I so admire. Emily came from the entrance to the infusion suite and called my name, and when she saw me, she immediately came over to me and gave me a warm hug.
“You look like you could use that,” she said.
“How did you know?” I asked. She had no idea what kind of morning I’d had. Perhaps she could sense my anxiety. It reminded me of the first bone marrow biopsy I had at Baptist Hospital in Pensacola when my last memory before the procedure began was of one of the nurses squeezing my hand reassuringly.
Simple gestures. Profound impact.
A few minutes later, I was settled in the recliner that I have decided is my favorite because it stays put when you recline instead of slowly creeping back towards the upright position like some of the others do. With my laptop on my blanket-covered lap, I logged into the medical center’s Wi-Fi and opened a draft on my blog. About that time, Emily returned with the instruments she needed to access my port in preparation for the Darzalex IV drip.
“I’ll be back in a minute with your Tylenol,” she said.
I immediately stopped typing and told her, “Oh! That reminds me…. this morning I took two extra-strength Tylenol on the way here for a headache I felt coming on, so I won’t need the Tylenol.”
The expression on her face suddenly changed to one of mild concern. “What time did you take the Tylenol?" she asked.
"It was around 6 o'clock this morning," I responded. "I've had two or three headaches over the last several days. One really bad one woke me up at 4 a.m.”
“On a scale from 1 to 10, how bad was it?” she asked as she stepped in front of my recliner and waited for my reply.
A feeling of apprehension began creeping into me as I answered her. “It was probably a 6,” I replied.
“Any other symptoms?” she asked.
“Yes. My vision has been blurry lately too."
“Hmm. Dr. Joudeh isn’t here on Mondays, so I’d like to run this by one of the PA’s before we start your Darzalex. Give me a few minutes, and I’ll be right back,” she said, and disappeared.
Oh my, I thought. It’s just a headache… not a big deal, right? Maybe I shouldn’t have said anything at all… on the other hand, if I didn’t say anything and it turned out to be consequential… who knows? As I waited for Emily to return and explain what was going on, I tried to distract myself by reading my news feed on Facebook.
A few minutes later, she came back. She kneeled down in front of my recliner and told me that Nicki, one of the PA’s, felt that it would be in my best interest to forgo today’s Darzalex infusion. They were going to work me into the schedule in Imaging for an MRI of my head at 11:00. I could stay there in the infusion suite until then, if I wanted.
A few minutes before 11, I tucked my laptop into my backpack, collected my power cord and earphones, swung my backpack onto my right shoulder, and headed downstairs to Imaging. I thought about how I would be visiting Imaging again the next afternoon for a breast MRI, something Dr. Joudeh had recommended due to the inconclusive results of my annual mammograms because of “dense breast tissue.” The MRI, as Dr. Joudeh explained, would provide more conclusive images. I was actually eager to see how much difference it might make.
If you’ve ever had an MRI, you know how noisy they are, even with earplugs, which I had for the MRI of my head, or with headphones piping in music, which I used the next day for the breast MRI. In spite of the bang-bang-banging, rat-ta-tat-tatting, and knock-knock-knocking, I managed to fall asleep during both of the procedures.
As I expected (and some may find hard to believe), the MRI of my head was normal. I’ll have to wait until next week to learn the results of the breast MRI, but I’m not really worried. I do want to know what Emily’s and Nicki’s concerns were about the headaches and blurry vision. My sister always texts me on days when she knows I have chemo, and when I told her about the MRI, she responded with a comment about how thorough my medical team seems to be. I found that to be reassuring. At the time, I really didn’t know what questions to ask, and in Dr. Joudeh’s absence, I wasn’t sure how much Emily would have been able to tell me anyway.
It actually bothered me more that I had to skip the Darzalex infusion as well as my corresponding Velcade injections. In spite of the fatigue, neuropathy, and other side effects, I just want to get to the desired numbers so I can undergo the stem cell transplant, get it behind me, and return to a more or less normal life. I still wrestle with my diagnosis, but I am learning to relinquish it to God and listen to the quiet voice that tells me everything will be okay.
References
(1) “Eglin Air Force Base Wildlife Management Area.” n.d. Florida Fish and Wildlife Conservation Commission. https://myfwc.com/recreation/cooperative/eglin-air-force-base/
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