Ground Zero—A Gut Punch
Once again, it is a typical Friday evening in January, and I am feverishly working to complete leader evaluations. Finally, it was time to say goodnight, and I walked out of my office toward my car, heading for what I hoped would be a restful weekend and not knowing I was about to be transported to a new experience. After 4 and a half months of visits to a specialist with unexplained diarrhea, perhaps I was about to receive an answer and treatment for my challenge. As I tried to keep busy, not focusing on how I was feeling, I contemplated my plans. The holidays had been hectic, and I was not feeling my best. Then, the phone rang as I was driving home, and my life was about to change forever as I knew it—“Ms. Gonzalez, this is Dr. X, and the results of your contrast CT scan of the abdomen and pelvis just came in. It appears that there is a subtle attenuation noted on the head of the pancreas with mild dilatation of the pancreatic duct.” In other words, there was a tumor sitting on my pancreas, about to challenge me beyond my imagination. After the initial shock, I finally realized the gravity of the new road that was ahead. Feeling numb, I hung up the phone and called my husband, asking him to gather my family at our house that evening as I wanted (and needed) everyone there. The delivery of the news was taxing each time I relayed the possibilities and battle ahead. It was overwhelming for all of us—my husband, my children, my then soon-to-be precious daughter-in-law, my brothers and sisters, my chief executive and chief operating officer, board leadership, senior leaders, medical staff, and a group I also cared about dearly: my team of leaders and colleagues.
The World Changed in an Instant
My world was about to change dramatically, and I needed to arm myself and prepare to engage in the fight of my life. One of my most important calls was to a close colleague/leader who urgently guided me to the much needed help of the medical/surgical oncology team that has led me through my journey. I felt like Dorothy when she landed in Oz, such a strange place with many unknown adventures/challenges ahead and the overall goal of getting home. Where would I find the armor to fight, and how would I face my fears of treatments and outcome? The medical and nursing leadership team members were a critical component for my fight. The time stamp began on that terrifying Friday, and by early the next week, I was scheduled for an endoscopic retrograde cholangiopancreatography (ERCP) with biopsy and stenting of the duct. Of course, after seeing the gastroenterologist who would care for me in the ERCP, he told me if I developed a fever or jaundice to come immediately to the emergency room as they may need to do the procedure emergently. I know you must already know what happened: with a temperature of 101°F and my eyes beginning to become jaundiced, off I went to the crowded emergency room filled with many compassionate staff (I called them angels) who provided support and care. Surprisingly, the emergency physician who cared for me was someone I had worked with from another hospital in the expansion of my organization’s critical care transport system. It was very comforting to see and know a familiar face who provided excellent care and comfort during a very lonely and scary time.
When I was waiting for anesthesia for the ERCP procedure, I looked up from the hard, unfriendly table only to see the most welcome face of one of my former certified registered nurse anesthetist nursing students who had been in a DNP class that I co-taught in the prior semester. What a welcome sight, and always the question: “What are you doing here?” and “Don’t worry, I will take good care of you.” I found peace and pride in seeing a smiling and familiar face (another angel) in this unknown time and unmapped journey. I was now on the “other side,” and little did I know I was about to have a close-up of the patient experience. Throughout my career, patient experience and quality of care were inseparable and were a focus of mine. Here I was—broken, the house had fallen on me, and there was no going back to “normal” from the Land of Oz. So, I began to look and ahead and embarked down this remarkable road, often uncertain of my direction, always analyzing, absorbing as much as I could take in as I listened to the team that would become my stronghold, and I tried to go with the flow. As a chief nursing officer (CNO), I was used to leading and managing multiple activities and priorities, and taking an active role in what was within my control. Now, I was challenged to apply the years of knowledge to this very personal situation.
Seeing the Good in Each Moment of Opportunity
As leaders and nurses, we do not often realize how naturally decision-making is a part of the everyday routine, and translating to the new role as patient in this shifting paradigm was very difficult. I began to look beyond the obvious, grateful for kindness, and appreciating every moment and experience. The experiences varied such as a simple gesture of a staff member asking me about my family or offering me a warm blanket, which became a measure of care, and I acknowledged my appreciation to each person. A warm blanket represented a warm embrace of comfort, and I was amazed how much such a simple thing meant to me.
As a part of my preparation for chemotherapy and the treatment ahead, I scheduled my port placement procedure. Much to my surprise and another bright moment in this voyage, I heard, “Dr. Gonzalez, it is so good to see you!” She was also a former DNP student and colleague, and I am sure she did not realize how much she brightened my day as she was the advanced practice RN who performed my presurgical history and physical. As she was completing the preoperative forms, I looked out of the window to see a beautiful rainbow, and I relaxed in its beauty and comfort. I smiled as this, another angel somehow was there just when I needed the support.
Colleagues came by to offer support and comfort, sometimes remaining with me through the long dark nights. Those relationships and what they meant to me were (and still are) immeasurable for my spirit. Hope began to emerge in my heart, and I was grateful for the comfort and support that came from family and friends.
Physical and Mental Challenges
Not all experiences were without challenge: chemotherapy visits were weekly for 9 months. Side effects brought new trials and risks. During that time, I had 4 hospitalizations that were life threatening; a genetic inability to metabolize one of the chemotherapies; an unexpected saddle pulmonary embolism; and a fall with hemorrhage requiring immediate transfusions. Another angel arrived and held my hand during the admission/hospitalization for the pulmonary embolism. When he saw my name on the board in radiology, he (a nurse I knew for many years) came to check on me and assured me he would be there and assist my family.
Accomplishing a Mission—One Step at a Time
The medical/nursing team was my rock and encouraged me through each challenge, and they, too, were committed and supported me in achieving a seemingly unachievable short-term goal: attending my son’s and daughter-in-law’s wedding, walking down the aisle (out of the wheelchair), and dancing with my son. The 9 months of chemotherapy had finally come to an end, and after the wedding, the next giant step was surgery! The intricate planning stemmed from a true team effort as the wedding was not in Florida, it was a few states away. Required details included having an infusion out of state during my time there and flying with my family, including my daughter who has cerebral palsy, who was a bridesmaid. Here we were, both of us in wheelchairs at the time, but both excited, and we did it with the incredible support of the medical team, my family, and my friends, who I began now to call my angel squad! Also finding a dress that was the right one and right fit was a challenge as I had lost a lot of weight, and what about my hair? I did not have much hair left, so how to style it was tricky preparing for the big day. After a very beautiful wedding and visits with friends and family in the gorgeous changing array of mountain colors in the fall, we arrived back in Miami, with 3 days to prepare for the surgical challenge of my life, removal of a Stage II tumor of the pancreatic head.
The Ultimate Goal
Finally, the admission for the last portion of treatment was a pancreaticoduodenectomy, or Whipple procedure. In this procedure, the head of the pancreas is removed, and the first part of the duodenum, the gall bladder, and the bile duct are completely rearranged. As for my journey, this adventurous trip has been an unbelievable journey accomplished with joy that I will never forget and will be eternally grateful for as I did not know all that was ahead of me—my life uncertain. My family, colleagues, and friends were my strength that made my goals possible. The trip to the wedding was also the last time I would see and spend time with my mother.
In reflecting upon my journey, I began to look for and see angels everywhere. I appreciated the smallest gesture, and I received much compassion, love, and support from my husband and family and the “angel squad” (colleagues, former nursing students, staff, and nursing and other leaders) who checked on me always, encouraging me to fight, even when at times I thought I could not go on—they always made me smile. Cards and letters were so beautiful and always brought a smile—a support and staple that I kept close by to read and reread when I needed them. My team brought me a beautiful blanket with all of their pictures on it that traveled with me to weekly infusions, and it enveloped me during the treatment, providing a much appreciated virtual hug.
Today, one of the greatest lessons I have learned is to remember how important it is to see the good and positivity in the world. To that aim, my first grandchild was soon to be born, and she continues to provide unconditional love, hope, and joy that remains in my life. (She is soon to be joined by a little brother who will provide another ray of sunshine!) Nourishing the soul was what provided optimism, strength, great hope, and love, even when the journey has been at its toughest, and of course, everyone needs an angel squad. I began to truly understand the importance of the role of the angels, and I was always looking for the other side of the rainbow.
A Family Affair
I struggled to recover, losing my hearing and my voice at one time, making communication with the medical team challenging. At one point, I went into respiratory distress, had abdominal leakage and sepsis, and spent 10 days in ICU on a ventilator. My family tells me these were some of their longest and most painful days—and I was so thankful I have no memory of them, although they did tell me how challenging it was to see me struggle and be asked about cardiopulmonary resuscitation.
What I do remember was spending all major holidays in the hospital and missing my son’s college graduation. I was so proud of him, and although they sent me a video on social media, it was not the same as being there to celebrate, cheer him on, and to tell him how proud I was of him! I also missed my little girl, and I was so happy for the beautiful time we spent together as part of the wedding party before the surgery. My husband was my rock although I knew how exhausted he was managing everything and being so worried about me. Finally, my mother passed away 2 days after Christmas, and I could not be with her to say goodbye in North Carolina. Grieving had become something that I was all too experienced with now, and her loss was overwhelming. Eventually, 2 years later, I was able to visit her grave and say my final goodbyes.
When I finally left the hospital and arrived home after 100 long days, I was overjoyed to be with my loved ones. I deeply appreciated all the angels I encountered and who supported me along this journey, and I am incredibly thankful for so much love and support. When I arrived home and looked outside the window, there were no flowers or plants or birds, and I realized their importance to me. So, I continued the road to healing and immediately planted fruits, vegetables, flowers and a mother and baby cardinal adopted me, reminding me of the beauty in the world and the importance of nurturing. I appreciated the road that brought me home and the village of family, friends, and colleagues that had gotten me there. There is no place like home!
I have learned so much through this special, intimate, and challenging journey as a patient. Feelings are raw, and being strong is essential through each crisis. As a CNO, there are also many parallel lessons I experienced, and here are a few of them:
- 1.Working in health care is a tough job. People are full of passion, commitment, and sometimes anger. It is immensely important to express appreciation for the team who is caring for you and others as their jobs are demanding and their work is essential, special, and definitely keeps everyone going. Say thank you.
- 2.Do not forget to feed the soul. Enjoy the view and smell of flowers, savor the taste of fresh, colorful fruits and vegetables and nature's beauty. Cherish and foster the strength of mind needed to enrich and uplift the spirit.
- 3.Encourage the asking of good questions. The care that is provided is complex and may illicit fear of many unknowns. Be prepared for answers, as some answers will be helpful and some may not deliver what you want to hear, as there is power in gaining knowledge when making life-changing decisions.
- 4.Managing multiple priorities is an essential and important skill. Nurses manage competing priorities every day, so being prepared for challenges is essential—they do not often arrive in sequence. As such, it is essential to be at one’s best and to elicit the support needed to face these challenges as they arise.
- 5.Providing comfort sends a special message. All patients are unique and special, and should feel cared for. For example, sharing a moment of support or providing a warm blanket represents a simple, kind embrace and says “I care about you.”
- 6.Keeping a sense of humor. Laughter is healing even when life is not easy and can help open conversations or push through complex issues and difficult moments. Releasing joy or wearing a smile can often provide clarity and peace.
- 7.Looking for the best in people. Celebrating the best in people and letting them know often how special they are is important for everyone’s frame of mind to fight the battles that they must face.
- 8.Staying strong. Keeping strong while remaining goal focused helps everyone on the team to work together, makes achievement attainable, and provides hope and positivity to the patient and the team.
- 9.Relationships in any profession are important. How precious my CNO colleagues, others from the C-suite, along with frontline leaders, friends and family were that kept me focused on the fight and provided immeasurable support! Those relationships are special and essential!
This journey has encouraged my reflection and appreciation of life’s blessings. I now notice the smallest things that may have escaped me before. I am grateful to my family, my medical team, my friends, my colleagues, my mentors, and my journey. Today, I try to always find and appreciate the lessons learned through each challenge and experience. Had I not been through this passage, I would not have noticed nor deeply appreciated the special angels along the way who always made me smile, providing words of encouragement and provided love like the feeling of a warm blanket. I cannot express enough my thanks to all of the family, friends, and nursing and health care colleagues who have been a part of this unplanned life experience and are the true reason that I am here today. Thank you!
Jackie Gonzalez, DNP, APRN, MBA, NEA-BC, FAAN, is the former system senior vice president/chief nursing officer & patient safety officer of Nicklaus Children's Hospital in Miami, Florida, and currently volunteers as a patient advisor with the University of Miami Health System/Sylvester Cancer Center in Miami. She can be reached at [email protected]
Published online: October 03, 2022
2022 by Elsevier Inc. All rights reserved.