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Don Jenkins: Pancreatic Cancer Survivor Story
Self-Written By Don Jenkins
Diagnosed: Late 2021. Stage 2
Current Status: Cancer Free Since Surgery
Celebrating My One-Year Cancer-Free Anniversary Since Surgery
On a beautiful fall day, with clear skies, a water temperature of 70° and weather for the bike and run course expected to reach 80°, the Muncie Ironman horn sounds and about 1000 athletes enter the water to begin their race. Of note was Number 212, Don Jenkins, a 63-year-old pancreatic cancer survivor celebrating his one-year cancer free anniversary since surgery.
I trained from February to August to get ready for the event, and over the next eight-plus hours, completed a 1.2-mile swim, a 56-mile bike leg and a 13.1-mile run.
“I wanted to do this event for several reasons; first, to celebrate my 1-year anniversary, second, to honor the many incredible people that helped me along the way, and third, to raise hope and awareness about pancreatic cancer and the great progress that is being made to improve patient outcomes, diagnose earlier, better treat and ultimately prevent this disease,” Don said. “I hope in the future to use an event like this to raise funding to provide whatever I can to advance continued research for the Medical College of Wisconsin and the Seena Magowitz Foundation a pancreatic cancer foundation.
I had no risk factors nor family history. I was completely caught off guard. I had no knowledge or awareness of this disease. I developed minor symptoms after an out-of-town event in late 2021; minor back pain and a change in urine color. My PCP conducted a series of tests that revealed elevated liver enzymes, prompting imaging studies that ultimately led to diagnostic biopsies.
After multiple opinions, I was diagnosed with Stage 2 Pancreatic Adenocarcinoma with some unusual attributes. I was found to have a tumor on the larger size, with high tumor marker levels, but no evidence of metastasis in any other area. I also discovered through genetic testing that I had a genetic mutation that provided
NAVIGATING A NEW DX
One of the biggest challenges for me was dealing with the unknowns, which changed depending on where I was in the process. I was also overwhelmed and had no idea where to start, feeling like the prototypical “deer in headlights.” To address this, I took a problem-solving approach and focused on a few things:
1) I educated myself and researched and armed myself with knowledge to better participate in my care;
2) I used my knowledge and referrals to build a world-class team;
3) I then worked with my expert care team to help build and understand and execute a cohesive treatment plan
I set out to control what I could control and leaned on my team and family for the rest. Feeling in control helped me maintain a positive attitude. I also broke things down into manageable parts, which helped me avoid feeling overwhelmed.
EDUCATING MY SELF
I decided to ignore the numbers and sought to immediately educate myself about my situation. Arming myself with knowledge after my diagnosis was very important to me despite the pessimistic outlook offered by most articles and organizations. I wanted to know what I did not know, and I wanted to find the best people to help me solve this.
I was able to build a knowledge base and vocabulary to better participate in my care and also become aware of the different approaches to treatment and sequencing. I used my PCP, the NCBI, (National Center for Biotechnology Information), articles from top journals, the American Cancer Society and the PANCAN Action Network. Learning about the disease and the stages, treatment options and important criteria to consider in selecting a center and a doctor was very helpful and helped reduce my anxiety and build confidence. As a byproduct, my research efforts also exposed questions I could not answer about my treatment and the disease in general that I could then ask my providers.
BUILDING MY TEAM
Using my new knowledge along with referrals and my personal network, I met with several top oncologists at Northwestern and the University of Chicago. I used the opinions of the oncologists and my fabulous GI doctor from Northwestern to further understand the disease, my specific situation and their recommended treatment options. I learned that neoadjuvant chemotherapy was a first step and I also learned that I was a surgical candidate. My research and referrals then led me to several excellent surgical oncologists, including Dr. Douglas B. Evans at the Medical College of Wisconsin. During this process, I learned that the important criteria in selecting a surgeon included:
- Clinical leadership and expertise
- Volume and experience
- Logistical support for patients
- Genetic testing capability
- The presence of a dedicated program
- Availability of integrated services
- Ability to coordinate care
- Comfort factor, the overall environment and the process and level of ease in accessing care
DEVELOPING AND MANAGING MY PLAN
After my initial appointment with Dr. Evans, I was fortunate to have the opportunity to become one of his patients. A plan was developed that included a specific sequence of chemo, radiation and then surgery, and another plan also developed for how I would navigate each phase of treatment.
I chose to have my treatments closer to home and travel to see Dr. Evans as needed. This was going to be a long road and a huge source of strength for me and my family, aside from clinical leadership, was the kind, optimistic, compassionate, collaborative, accessible and effective care from my care team – specifically from my MCW team. I never had to wait to bounce ideas or concerns off any of my doctors or staff or to get help or get questions answered.
or example, during chemo, two of my most troubling side effects were GI distress and feeling nauseated. Working with Dr. Evans and my local doctors, several modifications were made to my weekly plan that resulted in a dramatic level of improved performance. This was the difference between quitting and willingly continuing.
After chemo, next up for me was chemo-radiation, which was thankfully uneventful. Whipple Surgery was next. During the pre-op. phase, I learned nutrition and fitness were key factors in enhancing recovery, so I followed Dr. Evans, Gabby’s and Michelle’s guidance about nutritional and physical preparation.
I closely followed the nutritional plan and hit the gym almost every day for six or so weeks. When surgery day arrived, I knew I did everything I could on my end. That, combined with the trust equity and comfort I had built with Dr. Evans and his team, helped me head into surgery confident and less anxious. I experienced little pain, no co-morbidities and was out of the hospital in about five days.
DEVELOPING THE STRENGTH TO SUCCEED
Throughout my journey, I relied on a problem-solving mentality. My advice is to become a proactive participant in your own care and to try to break down your journey into manageable pieces. Learn what you can. Learn, and build the team you are comfortable with and take the challenges one at a time.
As far as family, life and work balance, you must make your treatment a priority. While I forced myself to compartmentalize, I prioritized my treatment because I knew no one was more invested in my success than myself. Outside of the clinical environment, I also received key motivation and support from my wife, kids, a few key friends and, of course, my faithful dog.
Certainly, everyone is different, and some patients will find some resources helpful and others not so much. For me, my approach built my confidence to get through this, and you can do the same thing.
As for results, one year later, I am cancer-free. I have no measurable disease and completed an Ironman 70.3 Triathlon to celebrate this milestone and show cancer who is boss. I also hope my participation in this event will raise awareness while honoring my providers and supporters. Research and treatments in this area are moving along with great speed, and I hope others may see some inspiration and hope.
A final point worth mentioning is that during my treatment that lasted almost a year, I was treated with respect, kindness and generosity throughout my experience. I also found that I was able to get direct answers to every answerable question I had, and there were a lot. I frequently felt like I was their only patient, which I know is certainly not the case.
In summary, I usually try to avoid mentioning specific people that have earned and deserve a heartfelt “thank you,” because, inevitably, I will forget someone in the flurry of a yearlong treatment. That said, I feel it is worth taking that risk.
First is my Northwestern diagnostic team starting with my excellent internist Dr. Susan Alt, who referred me to Sri Kommendari, a friend and excellent GI doctor. To be closer to home for treatment, I was referred by Dr. Mary Mulcahy to a location near my house and met my outstanding oncology P.A., Jenna Ottenhiemer, and several doctors that helped me during my treatment.
Second, I want to thank Blasé Polite from the University of Chicago for his incredible help, guidance and contacts. Third, I want to thank Dr. Douglas B. Evans as my team leader and surgical oncologist from the Medical College of Wisconsin. Dr. Evans designed and executed my plan and surgery. While he is a world-class surgeon and doctor who embraces innovation, he is also a straight talker who will answer any question you ask while remaining exceedingly humble. He is a rare combination of expertise, kindness, efficiency and clinical genius.
Last but not least, I want to thank the MCW team, that included many professionals including Dr. Mandana Kamgar, N.P.s Natalie Lang and Gabby Pyptiuk, P.A. Bente Smith, Dr. Beth Erikson, Michelle Derdzinski and many more.
THANK YOU ALL
In the end, due to my doctors, nurses, P.A.s and some help from God, I had the opportunity to see my daughter win her second state title in lacrosse, graduate high school and start her college career as both an engineering student and as an NCAA D1 athlete. I was also able to see my son graduate from his five-year engineering program and had the honor of pinning on his 2nd Lt. bars on his uniform as he commissioned into the USAF and headed off to pilot training, following as the third generation in our family tradition of service before self – like his dad and grandfather (Major General).
I started my treatment in January 2022, finished in at the end of June, had surgery in August and was pronounced cancer-free shortly thereafter. Only 12 months later, I completed an Ironman. I would have done it earlier, but someone at MCW told me I had to wait a few months to heal before doing anything strenuous.
Reflecting back, I never started out to be anything other than a person who got some bad news and decided to try to proactively do something about it. I am a very private person. However, I decided to share my story because if there is just one person out there that may find this helpful, then I wanted to try to help. Each person’s situation is unique, and each person has the ability to chart their own course to win their own battle in their own way.
FIVE KEY TAKEAWAYS
1. My advice is to not to let cancer define you and become a proactive participant in your own care.
2. Try to break down your journey into manageable pieces use a problem-solving approach for each piece.
3. Build your confidence by educating yourself and building a team that works for you, and only focus on one step at a time. Regarding your team, your selection due diligence reinforces your confidence, but repeated effective interactions build trust. Both are very important in this type of relationship.
4. Control what you can control and rely on your medical team for the rest.
5. Use the support that works for you – I relied on my team, my wife, my family and a few key friends to provide motivation/support