Don Jenkins

DIAGNOSIS
I had no family history, never smoked, played multiple sports and had a decent diet. A few months after a full physical, I started experiencing minor back pain and had a sudden change in urine color. My PCP insisted on conducting series of tests that revealed elevated liver enzymes prompting a series of imaging studies.

Those studies (ultrasound, MRCP and CT) led to biopsies via ERCP and after several opinions, I was diagnosed with Stage 2, Pancreatic Adenocarcinoma. My diagnosis was a bit unusual because I was found to have a tumor on the larger size that was combined with high CA-19-9 but fortunately there was no evidence of metastasis. Needless to say, I was completely caught off guard and had no awareness of this disease.

NAVIGATING A NEW DIAGNOSIS
One of the biggest challenges of receiving this diagnosis is dealing with the unknowns, which constantly changed for me depending on where I was in the process. When I was first confronted with this news, I felt overwhelmed and had no idea where to start. To combat this, I took a problem-solving approach and focused on a few things:

•Process – This is horrible news, but everyone must process the news in a way that works for them, after that get to work.

•Learn – I educated myself about the disease and my diagnosis, sought multiple opinions, and conducted research. I armed myself with knowledge to better participate in my care and build confidence.

•Find your Best Team – I leveraged my knowledge along with the referrals I received to build a great team.

•Take Action – My team helped me understand and execute a cohesive treatment plan, while offering support how and when I wanted.

In summary, while I never felt completely in control, I broke things down into manageable parts, I took action and I fought to control what I could control and leaned on my team and family for the rest. This approach helped me to create a feeling of being at least in some respect in control and helped me to maintain a positive attitude.

THE IMPORTANCE OF LEARNING
Every case is different and every journey is different. For me, I sought to immediately educate myself about my specific situation. I wanted to know what I did not know. Through my research, I learned about the disease, the stages, the role of bio-markers and the different approaches to treatment. I also learned about the importance of treatment sequencing, the role of clinical trials and the importance of genetic testing. I also uncovered the important criteria to consider when selecting a center and a doctor. To do this, I used my PCP, the NCBI, (National Center for Biotechnology Information), articles from top journals, the American Cancer Society, the Seena Magowitz Foundation and others to gather information and contacts. This process helped me to build a knowledge base and vocabulary to better participate in my care, and once I understood what I was dealing with, I sought to find the best people to help me.

FINDING A QUARTERBACK AND BUILDING A TEAM AND PLAN
I met with several top oncologists. I used the opinions of the oncologists and my GI Doctor from Northwestern to further understand my specific situation and their recommended treatment options. I learned that neoadjuvant chemotherapy was the recommended first step and I also learned that I needed to meet with a surgical oncologist. I scheduled appointments with several excellent surgeons, including Dr. Douglas Evans at the Medical College of Wisconsin. Before these meetings, I learned that some of the important criteria in selecting a center and a surgeon included:

•Clinical leadership and expertise in PC – including surgical, diagnostic and vascular

•Surgical volume and outcomes

•Logistical support for patients

•Genetic testing capability to assess and inform treatment decisions and options

•The presence of a dedicated program and integrated services for PC

•Ability to coordinate care – with home/local doctors if needed

•Personal attributes like comfort, the environment, ease of access, interpersonal fit, confidence

PUTTING THE PLAN INTO ACTION
After my initial appointment with Dr. Evans, a plan was developed that included a specific sequence of chemo, radiation then surgery. As part of this process, my genetic testing, revealed a mutation that suggested high sensitivity to Chemotherapy.

Since I knew this was going to be a long road, with a lot of uncertainties, for my own comfort I chose to be closer to home for my neoadjuvant treatments and travel to see Dr. Evans as needed.

As far as coordination of care was concerned, this was well managed. For example, as I was dealing with a few persistent side effects that included GI distress and nausea, a collaboration between my MCW team and my local Doctors provided modifications to dosage levels based on my genetic test results, and an adjusted weekly plan that resulted in a dramatic level of improved performance. For me, this was easily the difference between possibly quitting and willingly continuing to the end of 8 cycles.

After neoadjuvant treatment, the next step for me was chemo-radiation, which was thankfully uneventful. MCW has a world class radiation oncology program, that includes doctors, equipment and expertise with a specific focus on pancreatic cancer.

Surgery was next. During the pre-op phase, I learned nutrition and fitness were key factors in enhancing recovery, so I followed the guidance about nutrition and chose to hit the gym for the 5-6 or so weeks before my scheduled surgery. When surgery day arrived, I knew I did everything I could, and that preparation, combined with the trust equity and comfort I had built, allowed me to go into surgery confident and less anxious.

Post-surgery I experienced little pain, no co-morbidities and was out of the hospital in less than a week.

KEEPING THE STRENGTH TO SUCCEED

Be Proactive – Throughout my journey, I relied on a problem-solving mentality. My advice is to become a proactive participant in your own care, and try to break down your journey into manageable pieces. Learn what you can learn and build the team you are comfortable with.

Make Treatment a Priority – As far as family, life and work balance, you must make your treatment a priority. While I forced myself to compartmentalize, I also prioritized my treatment because I knew no one was more invested in my outcome than I was. Outside of the clinical environment, I also sought key motivation and support from my wife and immediate family, a few key friends and of course my faithful dog.

Focus on Yourself – No two cases are the same. There is no one size fits all model. Understand that the generalized statistics are averages and are not patient or case specific. Get what support you want and need the way that works for you, different people will find some resources helpful and others not so much.

Use the Approach That Works for You – For me, I used a logical approach which built my confidence to get through. It is my hope that some of these ideas are helpful, but the point is to develop your own approach and execute.

A FEW FINAL POINTS
From the beginning, I took advantage of the latest in diagnostic testing, sought multiple opinions and obtained genetic testing to better inform treatment decisions. I also learned about the latest clinical trials that were available, though for me I did not need them.

Also, it is important to be thankful, and while I try to avoid mentioning specific folks that deserve a big thank you because I know I will forget someone amongst the flurry of treatment, 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 Dr. Sri Kommendari, my GI doctor. My local chemotherapy treatment team at Northwestern included my excellent oncology PA Jena Ottenheimer, oncologist Dr. Mary F. Mulcahy and palliative care physician Dr. Heather Hopkins, all of whom were all critical allies. I also want to thank Dr. Blasé Polite from the University of Chicago for his time, guidance and contacts.

Dr. Douglas Evans was my great team leader and surgical oncologist from the Medical College of Wisconsin, who designed and executed my plan. While he is a world class surgeon, who embraces innovation, he is also a straight talker who will answer any question you ask while remaining remarkably humble. He is a rare combination of kindness, efficiency and clinical genius.

My MCW team also included many professionals including oncologist Dr. Mandana Kamgar, Nurse Practitioners Natalie Lang and Gabby Pyptiuk, PA Bente Smith, Radiation Oncologist Dr. Beth Erikson, Dietician Michelle Derdzinski and many more. All went above and beyond to help me.

During my treatment lasting almost a year, I frequently felt like I was their only patient, which I know is certainly not the case. Further, I never had to wait to get appointments or bounce ideas or concerns off Dr. Evans or his team (there were a lot of questions!). Also, the support I received from my local team and my family was key, but the kind, optimistic, compassionate, collaborative and accessible care I received from my MCW team was especially appreciated.

Thank You to Everyone!

As for my results, I started my treatment in January, and was fortunate to have a strong response to neoadjuvant treatment. I finished that part in May, completed chemo-radiation in June, had surgery in August and was pronounced disease free shortly thereafter. One year later, almost to the day, I completed an Ironman 70.3 Triathlon to celebrate this milestone and to show cancer who is boss.

Further, due to my doctors and nurses and PA’s and help from God, I also had the incredible opportunity to return to my family to celebrate several milestones. These included celebrating my 30th wedding anniversary and getting to see my daughter graduate high school and start college and her career as a division 1 athlete. I was also able to see my son graduate from college and commission into the United States Air Force and I had the honor of pinning his Pilot Wings on his chest after he completed training. He is now the third generation in our family tradition of service before self-like his USAF Dad and his USAF pilot grandfather (who retired as a Major General).

KEY TAKEAWAYS

Upon hearing the diagnosis, I reacted and went through what is probably a common set of emotional reactions that anyone receiving this news would. I never started out to be anything other than a person who got some bad news, and then decided to try to proactively do something about it. I am a very private person, but I decided to share my story because if just one person finds this to be helpful, I want to try to help.

1. Do not to let cancer define you, but become a proactive participant in your own care. Help yourself and get help (SMF, local resources, your Pancreatic Cancer Center to name a few).

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, building a team that works for you, and focusing on one step at a time. Have faith in 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. Everyone’s situation is different; there is no one size fits all. Control what you can control, rely on your medical team for the rest. Exercise, focus on nutrition, maintain your faith.

5. Use the support that works for you, whether online or in person, community or cancer organization based or through your provider or family – this is important for motivation, support and to reinforce a positive mindset.

You got this!