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Parental Wisdom and a CLL Diagnosis

Parental Wisdom and a CLL Diagnosis
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Published on March 6, 2020

Peter Titlebaum, EdD, is a college professor at the University of Dayton. He is 60 years old, an avid cyclist and was diagnosed with chronic lymphocytic leukemia in 2019. He is currently on watch and wait. In this article, Peter shares his incredible story, told with humor, wit and grace.


peter titlebaum 300x300The older I get, the more I appreciate my dad’s wisdom. As a child, I just thought Dad had a collection of great sayings. “If it were easy, everyone would be doing it,” he’d say in his upbeat voice. Or, “When the going gets tough…the tough get going.”

While I later learned that these were classic clichés, they always seemed to have a deeper, more relevant lesson that Dad wanted to impart. My favorite was, “I would rather have my crap than someone else’s.” Dad wanted us to embrace our situation, no matter how difficult it might seem at the time. Even if we didn’t like it, at least we knew it. That lesson came in loud and clear for me in 2019.

It was Dad’s wisdom and Mom’s belief that bad things come in threes—yes, talking in clichés clearly runs in my family—that helped me get through not one, not two, but three daunting experiences last year. Life can be going great—we can be coasting along and enjoying the ride, but we all know it’s just a matter of time before that changes.

The Car Accident

I was driving to Columbus on I-71, in the right lane in my Prius C, at a respectable 65 miles per hour. I was singing my tunes, minding my own business and enjoying the ride, when I felt a tap on the back left side of my bumper.

car accidentBefore I could react, my car swerved hard left, and I was now driving sideways down the highway. Soon, I wasn’t driving at all. My car was being pushed down the road. No matter what I did with the brakes or steering wheel, I was defying all theories of motion and tire direction and had zero control. Needless to say, I was no longer enjoying the ride.

When I looked out the window, I immediately identified the problem—the extremely large front grill of a semi-truck was connected to my car. In fact, the grill was taller than my entire car, and there were less than three inches between me in my highly fuel-efficient, not-a-square-inch-of-extra-space compact Prius C and this massive double-rig truck. Thanks to the 20,000 pound load the truck was carrying, it continued to push my car 650 yards sideways down the highway, despite the driver’s best efforts.

Once my conjoined partner and I came to a stop, I exited through the passenger door since the driver’s door was stuck. The rescue squad arrived and took my vitals to see if we should go to the hospital. My blood pressure was 110/70 with a pulse of 58. The truck driver’s blood pressure was 150/100 with a pulse of 110. He looked at me and said, “What the hell?”

“You should feel good,” I responded. “My resting heart rate is usually in the mid-40s. I did see my life play out all over again, so that was pretty cool.”

I didn’t want to alarm my wife, Deb, but I had to let her know. My innate stress management technique had kicked in, so I sent her a text that said, “Honey, my car is now a hood ornament for a semi.” In case she thought I was joking, I added pictures for effect. Fortunately, I walked away from that accident all in one piece.

The Bike Accident

peter titlebaum bikeFour weeks later, I was planning to drive a cargo van to Chicago to take my daughter, Alayna, to college and move her into her first apartment. I got up early to start my day with my usual 25-mile bike ride, which I mapped out to end at the rental car facility where I would be picking up the cargo van.

Five miles from the end of my ride, I found myself on a road that had recently been stripped of its top layer of asphalt. The road was incredibly bumpy, but I had ridden on equally bad roads before, so I continued on—that is, until a speeding car with an aggressive driver forced me to the far right edge of the road, and I flipped head first into the gutter.  

“I’m okay,” I thought, as I picked myself up and did a quick mental inventory of both my body and my bike. Despite a broken handlebar, my bike was still rideable, so I decided to hold the handlebar in place and keep going. Three miles later, my hand slipped, I dropped the broken handlebar into the front wheel, breaking a spoke, and down I went again.

This time I phoned Deb. She picked me up and drove me back to the house, where I showered, put a few bandages on my elbow and began to pack for the drive. Alayna and I were on the road by 10:00 AM, right on schedule. The five-hour journey to Chicago was uneventful, the move productive. After saying our goodbyes that evening, I grabbed dinner and drove home, where I crawled into bed in the guest room at 3:00 AM to keep from waking Deb.

The next morning, I walked in to greet Deb as she got ready to leave for work. When she saw me, her face fell—not the reaction a wounded warrior wants to get.

“Your right leg is twice the size of your left!” Deb yelled before running to grab an ice pack.  

Fifteen minutes later, when the small golf ball-sized lump looked more like a tennis ball, we were both seriously worried. Deb called in late to work and took pictures of the swelling, so I could send them to my doctor.

“If we don’t hear from him within 30 minutes, we’re going to the ER,” Deb said.

The doctor called as we were en route to the nearest hospital. He’d already scheduled an appointment for me and said he would see me within the hour. The diagnosis was immediate surgery, but I had to wait until the afternoon. We returned home, and I drove myself back to the hospital later that day, amazed by the irony of still being able to drive while on the brink of an operation.

The surgeon gave me a local anesthetic and drained 300 cubic centimeters of blood, then put a stent in my knee, so the blood would continue to drain. He also put one stitch in my elbow. Days later, the fluid was still draining, and I was finding it difficult to do even the most basic tasks—not to mention I was in mourning over the loss of my beloved bike. After all, this was no Schwinn!
           

My doctor quickly moved up to number three in my preset phone contacts, and within a week I prepared to return to the hospital for the long-awaited moment when he’d remove the drain and let me go on with my life. Unfortunately, however, when he removed the stent, he didn’t like what he saw.

“Peter,” he said, “you now need to take one of these long Q-tips, stick it in peroxide, and insert it into the wound two times a day to drain the bad blood.”  

Are we seriously living in the 21st century? Why not just tell me to buy a few leeches and do this the old-school way?

The idea of a brand-new car and bike almost made everything I had been through worth it—but I hadn’t yet experienced the third “bad thing” that would end up making the first two seem less significant.

The Cancer Diagnosis

peter titlebaum wifeI have a condition called Dupuytren’s contracture, which is hereditary—thank you, Mom and Dad—and was causing my fingers to curl downward. Before having a procedure done to fix it, I needed pre-surgery blood work. The procedure itself went fine, but the blood work caused concern, and they sent me for a follow-up test after the surgery.

“Just routine,” my general practitioner said. “Your white blood cells are slightly elevated, and I want you to see a different doctor.”

The second doctor did another blood test, and that’s when I was diagnosed with the big C. Cancer. CLL. Chronic lymphocytic leukemia. Whatever you call it, it’s still cancer. Now what?

“You’re at the zero level, which means we do nothing,” the doctor said. “We’ll take your blood three to four times a year, just to track how it’s progressing.” And then, as he watched me process this information, he offered his version of “encouragement.”

“I just want you to know, this is a very slow cancer—it’s the good kind of cancer,” he said.

If ever there was an ironic description, that was it, I thought.

“I also want you to know, CLL is not what is going to kill you.”

Good to know, thanks so much, I feel so much better now.

Being at the zero level, my doctor is taking a watch-and-wait approach. If I continue my health regimen, there’s no reason I won’t see at least another 20 years. I still work out every day and exercise enough for a small village, despite my wife’s protests about limits. But exercising and staying healthy were part of the doctor’s orders, so I added swimming this year to go with my biking. The only change to my diet so far has been adding green tea with honey and Orgain organic protein with a blueberry smoothie every day. Not too bad.

While I do not know what the future holds, this Patient Power community is important, and it is great that I have a place to gain more information and learn from others on this journey. The truth is, everyone is going to die one day, and we all have our own crap. The hand you could be dealt is likely worse than what you’ve already got. So the lesson is to own your own crap, like Dad always used to say. I have a great family and a wife I adore. Deb and I just celebrated our 10th anniversary, and I’m looking forward to many more.

I’m going to play this most recent hand with everything I’ve got, trust me. CLL? No worries, I’ve got this covered.

Mom and Dad, thank you for your wisdom. I want you to know that I did pay attention.

~Peter Titlebaum


Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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