Cancer caregiving a challenge

The National Comprehensive Cancer Network is holding its annual meeting in Hollywood, Florida, this week, and, as is their tradition, they begin with a panel on caregiving moderated by ABC newscaster and melanoma survivor Sam Donaldson. This year's panel comprised nine individuals, including Jill Snow, wife of Tony Snow, who died of colon cancer and was the former White House Press Secretary for President George W. Bush; Jai Pausch, wife of Randy Pausch, PhD, acclaimed Carnegie Mellon University professor and author of the internationally best-selling book, The Last Lecture, who died of pancreatic cancer; Liz Scott, the mother of Alex Scott, who died at 8 of neuroblastoma after creating Alex's Lemonade Stand to raise funds for research into childhood cancer. The panel was too large to get into any depth, but I couldn't help but think that for many of the hundreds of oncologists and oncology fellows in the room, it was probably an eye opener to hear some of the pearls dropped in the discussion. For example, Liz Scott recalled how they were told their daughter had cancer. The Scott's had taken Alex to the emergency room when she was 9 months old, knowing something was wrong. After hours of waiting, a woman came out and gave them a box of tissues and told them the doctor needed to see them. Others talked about getting the message about how bad the cancer was from body language, when doctors would not meet their eyes.Jai Pausch wondered why doctors didn't tell her that there might be a time when Randy would ask to die. She had no preparation when, near the end of his life, Randy told her he didn't want to be a horror show for his three small children. Jai was caring for Randy at home, and he told her that he wanted her to give him an overdose of morphine to kill him. Jai said she told him "no" because they had three children and who would raise them when she went to jail for killing her husband. The audience laughed. Jai did not.I think I felt the strongest empathy for the mothers on the panel as they talked about their children and how they tried to protect them and communicate with them. For some, such as Jill Snow, it was a challenge keeping the media at bay and trying to keep the children up to date but not frightened. Jill also offered one piece of wisdom for the oncologists in the audience when she talked about her exhaustion, and, when it became apparent Tony was going to die, she found herself with no emotional strength to tell her children. The oncologist, she said, asked if he could help by telling the children. She agreed and watched as he explained very sweetly that their father's heart was very tired of fighting and was going to stop soon. Despite the fact that there was little time for questions and the panel was too large, I am so glad NCCN honors those who have become known as "the other survivors."Donaldson was, as always, a great moderator, moving things along and offering quips and quotes, such as this one in response to one of the panelists talking about their life plans when they got the news."If you want to hear God laugh," Donaldson said, "make a plan."