In the softly lit chapel, the bride-to-be waited patiently. It was a moment that might have been dipped in amber and preserved forever. The man she loved stood by her side. Flowers graced the room. Many of the seats in the small space were filled by well-wishers looking on expectantly. It was a portrait whose perfect stillness was punctuated only by the occasional flash from a camera, a few whispered words and, finally, the arrival of the minister.
With that, bride and groom moved to the altar to take their vows. The minister gently recited the words of a singer and poet: “Come the twilight should we lose our way/If as we’re walking, a hand should slip free/I’ll wait for you/And should I fall behind/Wait for me.”
The minister pronounced them man and wife and they kissed. When the minister asked if either had anything to say, the bride broke the somber spell with her whispered words: “Hot diggity dog,” she said, sparking laughter.
It was a moment that suggested new beginnings, the promise of many days together for two people deeply in love. But this wedding held a different poignancy, a sense of what might have been crowding into the space that would otherwise been the province of what was to be.
Long fight, last wish
The bride, 51-year-old Teresa Kwapniewski, was terminally ill, her physical resources sapped by a two-year struggle against multiple myeloma, a cancer that attacks the bone marrow. A transplant of her own bone marrow in August 2014 had worked for a time, but the disease returned. Her providers, led by Clayton Smith, MD, a specialist in hematology and oncology, then considered a transplant of bone marrow from a donor, but by that time, the disease had advanced too far to consider the procedure.
“She had done pretty well until the last four months,” said Kelly Pacic, RN, OCN, clinical nurse coordinator for the Blood and Hematologic Malignancies Program at University of Colorado Hospital. “Eventually the cancer didn’t respond to treatment.”
Pacic had attended the wedding, held in the tiny chapel in the Anschutz Inpatient Pavilion at UCH, and snapped photos. Kwapniewski gave everything she had in her fight against cancer, she said: enduring long rounds of chemotherapy, putting her life on hold for months after the transplant, fighting infections, and spending significant time in the hospital as an inpatient. Kwapniewski gave up ground grudgingly, but the disease steadily claimed larger portions of her life.
“In two years, there was never a time she wasn’t here at least once a week,” Pacic said as she sat in a small office in the Anschutz Cancer Pavilion.
Helping hands. Kwapniewski didn’t go it alone. Most of the people who crowded the small chapel last week were her providers. The strongest hand was the one she held at the wedding: Tommy Clark, who became her husband. They’d known one another for 23 years.
“There was never a doubt where he would be,” said Tanisha Joshi, PhD, a psychologist with The University of Colorado School of Medicine’s Blood Cancer and BMT Program. Joshi worked closely with Kwapniewski to help her through the emotional difficulties of her disease. Both she and Pacic called Clark’s support invaluable for Kwapniewski.
“Patients who go through BMT need 24/7 care, both physically and emotionally,” Pacic said. Clark took on the challenges of learning Kwapniewski’s medications, flushing IV lines, and recognizing the threats posed by everyday life – like cleaning agents that can wreak havoc on a person with a suppressed immune system.
“We have to turn away patients for transplant if they don’t have the support of others,” Pacic said.
Search for meaning
In one sense, of course, Tommy Clark and Teresa Kwapniewski’s providers knew their fight would be for naught. She had exhausted every combination of chemotherapy and available treatment and would live out the final days of her life in home hospice.
But in another way, Teresa Kwapniewski had earned a significant victory, one that many of us can only hope to achieve in the remaining days that we are allotted. She decided what – and who – was most important to her, communicated it to caring providers, and knew she could save the time that remains with the person she loved.
She was a beneficiary of palliative care, a specialty still misunderstood by many only as a way to ease the sick and elderly toward the grave.
“People sometimes think palliative care is all about death and dying,” said Judy Knudson, MPAS, a physician assistant and palliative care specialist at UCH, who worked with Kwapniewski. “It’s actually about helping people to make the best use of their remaining time.”
Simply put, palliative care focuses on encouraging patients who cannot overcome their disease physically to find the emotional and spiritual support that will provide meaningful sustenance in their final days, Knudson said. Life becomes about the quest for quality in living.
“We try to help patients create their own sense of security when things don’t look secure,” Knudson said. “When things aren’t going well for them, we ask, ‘What adds meaning to your life?’” "What is most important to you?"
Final resolve
Initially a bit resistant to take part in a palliative care consult, Kwapniewski eventually came to terms with her condition, settled on the goal that meant the most to her, and received the support she needed to make it happen.
Getting married before leaving the hospital for hospice was “her number one wish,” said Kirsten Thornton, a social worker and case manager with UCH in an email. Tommy Clark worked with a friend to arrange for a minister to come to the hospital, and Thornton and others arranged flowers, clothes, and other details for the ceremony Sept. 9.
Teresa Kwapniewski died five days later. Having had just the briefest of contacts with her, I can nevertheless say her example underscores a powerful message. She had no say about when she died, but she exercised the power to say how she would die. Every patient should have the same choice, and we are lucky here to have providers who deeply understand that.
Consider also that she left the hospital with a memorable line – another small but not insignificant victory, not only for her but for the ones she leaves behind.
“‘Hot diggity dog’ was indicative of her – quirky, fun, and with a sense of humor,” Pacic said. “When I think of Teresa, I will think of her smiling.”
