By Peter Titlebaum, EdD – Patient
Whenever life throws a challenge my way, I tell myself, “I was born for this.” I reminded myself of this while I went through a year of cancer treatment. It may seem like a strange thing to say to yourself, saying you’re born to face adversity, but that’s the kind of mindset that got me through a challenging time.
I have trusted this mindset my whole life, no matter the obstacles. I’ve been an athlete since junior high, and while the sports have changed as I’ve gotten older, they have always been present in my life. Now, I’m a college professor, a husband, a father, and dedicated biker and swimmer.
My chronic lymphocytic leukemia (CLL) journey started at the end of December 2018. Just before that, I had operations done on my hands to address Dupuytren’s contracture, which is an abnormal thickening of the tissues in your palms, causing the hands to curl. I had bloodwork done, which revealed my white blood cell count was a little high. After an appointment with my general physician and more scheduled blood tests, it was revealed I had CLL.
A hematologist in 2019 told me I had cancer, but the good kind. I’m not sure this is recommended bedside manner. At this point, I understand what they were trying to convey. However, the real point is that it’s a slow cancer that usually does not cause death, so something else will get you first. Again, they need to think about their words.
“Watch and wait” is a term they use when you are not sick enough to need treatment. I know what you are probably thinking. You have cancer. Get treatment as soon as possible. Yes, I thought the same thing, until I was educated on CLL. A key fact is that 30 percent of people with CLL will never need treatment. Just maybe that would be me; not good odds, but not impossible.
I was at the zero level, armed with a brochure, and did homework on the web. This is not always the best place to do homework. Each quarter that I went to see the doctor, my WBC continued to rise.
In 2020, they were not happy with my WBC and wanted to do a bone marrow biopsy to get a better idea of what was going on inside my bones. It was an interesting experience, but I was able to use my athletic mindset to get through the process.
After looking at the results, the doctor wanted me to get a second opinion from Dr. Byrd, a lead researcher in the CLL world at The James, the Ohio State University (OSU) cancer center. OSU told me it would be 6 months before I could see him. Being the type-A person that I am, I asked for the next top doctor, and they referred me to Dr. Rogers.
We set up a plan where every quarter I would see her at OSU and Dr. Curran at the University of Cincinnati (UC). I was one of the patients who did not require treatment right away. When I was first diagnosed, I had hoped I would be able to go a while without needing treatment. I was in “watch and wait” until fall of 2021, when my white blood cell count jumped from 179,000 to 398,000/µL in the course of three months. In addition, my spleen was extended, so it was determined that I needed to have treatment—now. This means do not pass go, and do not collect $200!
After consulting with two hematologists, I was strongly urged to start treatment. However, which treatment was best for me? My first hope was to be on a clinical trial because I was worried about the expense. Just my luck, there was no trial that met my needs at either hospital. At this point, I preferred to stay at my local universities and research centers, specifically in Cincinnati.
My treatment plan would be a one-year protocol of taking two drugs, including venetoclax for oral use, plus obinutuzumab, which is an immunotherapy given by IV. Why this treatment plan? I could have taken pills until they no longer worked. On the other hand, I could follow a one-year protocol, taking two drugs in combination, and after a year, I would be in remission.
However, I did not know how long the remission would last. My rationale was that this is a chronic disease, and if there was a chance to be without medication for an undetermined period, it was worth the risk. Of course, this was just my personal experience and preference. I started treatment on my late father’s birthday. That must have been a good sign, right?
My goal was to keep my routine the same as it would be if I were not in treatment. I was given the option of having a port placed, since my treatment would involve many needle sticks. I chose not to have a port placed because it did not fit my active lifestyle as a swimmer. When it came to finding the right attitude for my treatment, I decided to approach it with a competitive spirit. I am a “glass half-full” person, and I need to control what I can.
Next, I had to tell my friends and family what was going on. While I am a private person, it’s important for me to be honest and vulnerable, because people care about me: my family, coworkers, even my students. My wife, who would be my caregiver, would need people who could support her as well in my journey.
I was able to schedule my treatment on Thursdays after class. The University hospital where I got treatment was about 60 minutes from where I teach. I realized how fortunate I was to have top-notch care so close to my home. When it was time to start my treatment, my doctor gave me a handout as to what I could expect for the first two cycles of medication. I got started with two days in a row of immunotherapy treatment, each session lasting four hours.
Before the fun, you have to have blood drawn and an IV inserted. Next, you have to take acetaminophen, and after one hour, you can then start the treatment. I always brought snacks, something to read or watch, and a sweatshirt. My first day of treatment was very long. I remember getting cold and needing blankets. I was ready for the day to be done.
My doctor was concerned that I might develop tumor lysis syndrome, a condition that occurs when a large number of cancer cells die within a short period, releasing their contents into the blood. Fewer that 10 percent of patients develop a risk of tumor lysis syndrome.
Unfortunately, this happened. My body’s reaction had me spend two fun-filled nights at the hospital. To pass the time, and with my doctor’s permission, I walked the halls. While spending a couple of nights in the hospital was a rough start to my treatment plan, I appreciated that my doctor was being cautious. She communicated her concerns to me, and I made sure to share my own. I found that developing a rapport with your healthcare team is crucial to managing your health.
Over the course of my treatment, I experienced some diarrhea and weight loss. My workout routine was fractioned, and I ended up drinking lots of water. After three weeks of treatments, my white blood cell count dropped down to 5,500/µL, which is within the normal range. In January, a few months into my treatment, I hit a speed bump when I contracted COVID-19. My final treatment was on February 24. After five cycles of combination treatment with Obinutuzumab plus Venetoclax and Acyclovir, I moved on to maintenance stage.
I must give kudos to my nurses for providing support through the process. Immunotherapy treatment is stressful and even scary, but the nurses at the University hospital were amazing. I let the nurses know how important they were to me and my health by bringing them desserts to each appointment. This could be cookies, buckeyes, or even hot chocolate bombs.
I didn’t have a bell-ringing ceremony to mark the occasion of finishing the IV treatment, but my wife and I and another couple did go out for a nice dinner to celebrate. I could not have done this little adventure in life without the support of my wife. While she was not having things done to her physically—the treatment, the needles, the medication— what I went through impacted her, too. She was never far from my thoughts, and she was always checking in on me when I needed it. Just having that special person who looks at things with a different perspective is a huge game changer.
I found solace in writing about my CLL experience and publishing articles on it. I also found support through a CLL online support group. The facilitator of a chapter reached out to me after reading one of my articles and asked if I would be interested in joining. At first, I wasn’t sure if being in a support group would be a good fit for me, but I reminded myself that information is power, and I had many questions. The people in this group were in a similar situation to me. So, I joined, and I’m glad I did. It gave me a chance to share my experience and gain insight from others. I never felt alone. The work to fight cancer isn’t strictly done when you finish treatment.
In the maintenance phase I maintain taking my Venetolax and Acyclovir which is taken to the prevention of viral infections, my doctors and they planned blood tests every 5 weeks, with visits to my hematologists. Barely a month after my IV treatments were complete, I encountered another bump in the road. During my week off due to spring break, I experienced a fever of 102 degrees.
We called my doctor, and they recommended I go to the emergency room immediately. There, the doctors kept giving me tests to rule things in or out. My first test was a lumbar puncture. A needle is inserted between two lumbar vertebrae. Next, they removed a sample of cerebrospinal fluid. At the end of the day, after pumping me full of antibiotics that got rid of the fever, they figured I probably had viral meningitis. By the end of the week, I was not running a fever, so they let me go home. Several weeks later, I started getting spikes in my temperature two to three times a day. It was between 99–102 degrees every day. Chills and hot flashes would cause me to sweat through several t-shirts a night. I went back to my general physician and hematologist, and they ordered the lab to take 10 vials of blood and a chest x-ray. As a precaution, I was put on antibiotics for pneumonia.
At this point, they wanted me to see an infectious disease specialist, who recommended more bloodwork. This time, 15 vials of blood did not show any real surprises. Next was NM PET CT imaging, skull to thigh. In this, my lungs lit up.
The next doctor up was a pulmonologist, as it was recommended that I have a bronchoscopy and biopsy sample taken. This involves going down into the lungs through the mouth under sedation for a further diagnosis. Ten days later, we had an answer for my mystery disease: cryptogenic organizing pneumonia (COP), a reaction to one of the medications for my therapy. This is a form of interstitial lung disease where the small airways (bronchioles) and alveoli (tiny air sacs) become inflamed, leading to difficulty breathing and flu-like symptoms. My healthcare team then started me on a standard treatment of corticosteroid therapy. Since then, I’ve continued my regimen of managing my CLL. While my journey with CLL hasn’t been the easiest, I know I was born to face challenges like this, because here I am, sharing my story with you all today.
We made it to remission. May this last for a long time. I am sure it was harder on my wife Deb, as while she was not being poked and prodded, it is difficult to see someone you love go through the ups and downs of a year of treatment. My CLL team will have my blood drawn and read the results and have virtual appointments with me for the firth 2 months. If all looks good it will be every 3 months post-treatment, my blood is drawn for the first year, to make sure my remission is being maintained. We need to trust the process. While there is no promise that the CLL will not come back, the CLL medical community will have new and improved treatments in the future. It is not a matter of “if,” but “when”.
CLL has taught me to handle adversity, to be grateful to others, and never to doubt my own strength. I could not have completed my treatment without the support of my family, friends, and healthcare team. And to all of those with CLL, no matter where you are in your journey, remember—you were born for this.
Peter Titlebaum, EdD, is a college professor at the University of Dayton. He is 62 years old, an avid cyclist and diagnosed with chronic lymphocytic leukemia in 2018.
