By Peter Titlebaum, EdD – Patient
The purpose of this article is to share how to maintain a positive attitude through a cancer journey. Understand, this is one patient’s perspective. Having been an athlete my whole life, I realize the power of the mind. While I’m not able to change what’s happening to me inside my body, how I think about it has an impact.
My advantage is being able to put my mind someplace else, break things down to smaller steps, and not get overwhelmed with setbacks that will take place during treatment. My chronic lymphocytic leukemia (CLL) started at the end of 2018 and was at zero level, which meant wait and watch stage, in which 30% of all patients will never need treatment.
You don’t need to be a math major to realize those are not great odds. By 2021, my white blood count had risen to 398,000/µL, (normal range is between 3,000 and 10,000) my liver was extended, and it was time for treatment.
My choices were to take a medication for the rest of my life (or until it failed) or take a more aggressive approach and undergo a year of therapy with two drugs, obinutuzumab and venetoclax,with the expectation that I would be in remission within a year. However, we would not know for how long it would last.
Due to the fact that CLL is a progressive disease, and that there was an opportunity to discontinue medicine for a period of time, it was worth that risk, and I bet on my ability to tolerate a year of treatment.
My goal is to maintain my physical fitness, which helps mental health. Exercise is a choice and has never been negotiable for me. My plan is to do 90 minutes of exercise every day. If exercise stays in my life, there is a good chance I will be around tomorrow for my family. It might need to be adjusted, and that is OK, but keeping it in my routine is important. My best thinking is done when working out.
This is not to say my exercise has not changed over the years. While not running marathons anymore, the same lessons still apply. It is important for me to be engaged in walking, swimming, biking, playing pickle ball, or racquetball. I am a happier person to be around.
It’s important to break down a big goal into smaller goals. It is one mile at a time. Or in this example, one year of treatment, one day at a time. You don’t get to skip a step. While hoping for everything to go as planned when you are in treatment, it helps if you can adjust, as life will throw you some curveballs. Over my year, I was hospitalized three different times.
Cancer Picked Me
It could be easy to ask, “Why?” The better question is “Why not?” We are all on this journey called life. My choice is to lean in and contribute to my own care. No matter what happens, my mindset is that this is going to be a successful outcome.
I gain control by doing research this helped me on my CLL Journey. Ask questions. Realizing this was happening to me, now was not the time to be passive. By immersing myself with current information, best practice from professionals, and from patients who had previously experienced the treatment they were recommending for me, was critical in keeping a positive attitude.
In my research, I found lots of information written by doctors, and while it was professional, it was missing the details of patients who were undergoing the same treatment that was recommended for me. I am a college professor, so writing up my experience was natural for me. The goal of my writing was to share my journey so it might help someone learn from the patient perspective.
This has resulted in three articles on my experience dealing with CLL in hopes of making the experience seem less scary to current patients and caregivers. Information is power. This is where a lot of men have difficulty because it’s not in their DNA to become vulnerable and admit they need information. The reason that athletes have coaches is so they can improve. The hope is that you can use my insight. The goal is to share expertise and realize you are not alone.
Community – Knowledge is Power
Being your own advocate is imperative for this journey. Understand that doctors have many patients, and while they try and do their best, they sometimes lose perspective, and they need you to be an active participant in your health plan. My Cincinnati Chapter CLL Society support group informed me what was best practice for CLL patients dealing with immune deficiency, due to the disease and its treatments.
Being in active treatment during Covid added a twist. After five months of obinutuzumab treatment, I had no resistance to Covid. It was important to take care of myself and avoid groups and know this was temporary situation. I could easily get caught up in stress and anxiety and worry about my mental health. My physical fitness keeps me focused on what I do control. The last day of receiving the infusion was the right time for either the Covid booster shot or Evusheld. The knowledge about Evusheld treatment came from my CLL group which made me a better advocate for myself, and thus I received Evusheld on the last day of obinutuzumab treatment.
Be proactive, not counting solely on the doctors, as they are busy people with lots of patients. While they would eventually have recommended that I receive either Evusheld or the booster, I took initiative. I encourage other patients to take the lead in their own CLL journey. I was able to ensure that the proper treatment happened, controlling my health and not counting on others to advocate for me, thanks to the knowledge gained from the CLL community, my own research and the desire to be proactive. Mental attitude is important when going through the challenge of cancer.
While facing this difficult time, I choose to empower myself with a positive attitude. I did not pick cancer, but I’m maintaining a positive attitude while going through it. To give you an example, every time I went in for my infusion, it was important to me to be proactive, and I brought in goodies for the nurses, like brownies, cookies, buckeyes, and even hot cocoa bombs. It was important to get my head in the game, to be connected to the staff in a favorable way and to share my positive attitude. The nurses are heroes, and they are often overworked or get worn down when people have a negative attitude. My positivity would rub off on them, and they would look forward to working with me.
Reality is to control what you can. You might question if this really helps. For me it gives me that competitive edge of being present. I will take any advantage I can get. The mind is a very powerful tool that can harness and control my mental state. You’ve heard the expression “fake it till you make it”. The year of treatment is an inconvenience, but it will not define me.
Saving the best for last. Deb is my wife and the person who is on this journey with me. She’s that person who has my back. That person who will tell me that I am sicker than I think, or that it’s time to call the doctor. She will call Laura Alexoff, the CLL support group facilitator, to get more information. Deb and I are a team, and this allows me to keep my head in a positive mind set.
We are not the disease. More important is my role as a husband, father, and brother. Being a college professor/mentor has given my life purpose and friends. It just so happens that cancer is in my life, but others can gain from me sharing my story.
My joke is that I plan on dying with a full to-do list. The day you stop setting goals is the day you start dying. Life begins at the edge of the comfort zone. Cancer picked me, and I can’t control that. However, it will not affect my positive attitude. You might think, “What if your treatment does not work long term?” No worries, this has been my superpower my whole life.
Control what you can. That is why attitude is so important. Trust me, you will gain insight and that is power in dealing with your cancer treatment. Best of luck in your journey. Remember to harness the mind.
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.