Mankind at its most desperate is often at its best. When the physical is reduced to an ugly irrelevance, the possibility of blinding human beauty emerges.
Bob Geldof, 1985Twenty years old is an age when most young girls are preoccupied with the newest pair of blue jeans or the flirtatious look from a handsome young man, and with college courses and ambitious plans for the future. But not Rebecca—at age 20, she was in bed, burdened with the wounds of metastatic ovarian cancer, a cancer that was growing faster than chemotherapy and surgery could contain. But to Rebecca, the glass was not half full or half empty, but always full—to the top. She wanted to be a physician's assistant—she wanted to help people. But at the young age of 20, Rebecca was confronting the fight of her life—and to all of her physicians, slowly losing that fight—but not in her mind. I was introduced to Rebecca at a palliative care consultation for pain management.
“Hi Rebecca, I'm Dr. Rousseau from palliative care. I was asked to come by and see what I can do for your pain.”
Rebecca was nauseated, constipated, and having trouble with oral medications, so we made a plan to try a transdermal fentanyl patch. She was on intravenous hydromorphone, but told me she was ready to go home, irrespective of what the doctors wanted. She was going home to ponder whether to undergo further chemotherapy.
“I'm out of here tonight, I want to get home. I want this IV stopped, and some other form of pain medicine—I've been in the hospital too long.” And she did get home, much to my surprise.
We spoke on the telephone a few times after her discharge, and I was delighted the fentanyl patches I had prescribed were working to relieve her pain. But two days later, she ended up in the hospital with a distended abdomen, nausea and vomiting, and severe pain. Opioid-induced constipation was considered the culprit, and aggressive laxative therapy and intravenous pain medication were started; they relieved her discomfort for a while, and chemotherapy was started. Unfortunately, a CT scan showed the tumor was growing more quickly than many of the oncologists had expected and was now producing a bowel obstruction, and even though chemotherapy was being infused, the likelihood for palliative success was considered minimal to nil. Total parenteral nutrition (TPN) was started, and a nasogastric tube placed to relieve pressure from the obstructed bowel. Rebecca's blood count was also dropping secondary to bleeding into the tumor and likely elsewhere, so blood was transfused.
After 5 days in the hospital, the oncologist and I sat with Rebecca, her parents, her boyfriend, and her boyfriend's mother, and the oncologist told Rebecca that he was afraid that the tumor was so aggressive that the chemotherapy would not have a chance to work, and that the tumor was also compressing major arteries, and that hard as it might be to say, he didn't think anything he did would help.
As he gently held her hand, the oncologist voiced some very difficult words: “Rebecca, I think you're dying. I think you may only have a few days to live.” I knew the words were true, and I knew that they were necessary, but my heart sank as Rebecca's parents stood helplessly by her bedside.
There were painful moments of silence, and then he continued.
“Rebecca, I need to know what you would want done if your heart stopped—can you tell me?” As I sat there, I wondered how a 20-year-old could understand, let alone answer, such a question—a question meant more for someone in their 60s, or 70s, or 80s, but not someone in their 20s.
“Also, you need to know that if we did attempt resuscitation and it was somehow successful, it would almost certainly be impossible to get you off of the ventilator—and that would mean your parents would have to make the decision to withdraw therapy at some point in time.”
Rebecca opened her lethargic eyes, looked at everyone in the room, and then at the oncologist.
“I'm not ready to give up, I want the chemotherapy, I want everything done to help me, even if it means being on a machine.” She did not want to die, and furthermore, was not ready to die. I felt a desperate sense of relief, for I was no longer a physician, but rather the father of two daughters silently pleading for the safety of another's daughter.
“That's fine Rebecca, we'll honor your requests. I just needed to know what you were thinking, and what you wanted done.”
As I listened to Rebecca's words, I wondered at the meaning of her suffering. Perhaps it was to remind us of the irrelevance of our physical shell and the importance of our human essence. Or perhaps it was to embolden us to remain tenacious in the fight for life. Or maybe it was quite simply to illustrate the necessity and importance of love and forgiveness.
There was silence in the room as minds cried and words faltered. Then Rebecca half-whispered, half-spoke.
“I'm not giving up, I'm not giving up.”
As I looked at her parents, my heart ached, for 8 weeks earlier, during one of Rebecca's hospitalizations, her brother James was traveling from another town to visit Rebecca. His mother told me he had a nice motorcycle, a state of the art helmet, and a protective leather jacket. As he traveled down a rural road, most likely at 50 to 60 miles per hour, a car backed onto the road. James broadsided the car and was killed instantly—he was 21 years old. James and Rebecca were the only two children these parents had—one now dead, the other staring death in the face.
“Okay Rebecca, we'll keep doing what we're doing.” The frowns slowly melted from her parents' faces, and for a while, things were “okay,” and death was ushered out the door.
As the days passed, Rebecca persevered in her fight against cancer, displaying a dignity and presence that were remarkable for a 20-year-old. During one of my visits, Rebecca reminisced about her brief life: how she worked at a Sonics restaurant, roller skating food to patrons' cars, and how she worked as a barista at the coffee shop at a Barnes and Noble book store. Such a young age to discuss a “lifetime” of memories.
But remarkably, and seemingly against all odds, the nasogastric tube came out, as did a Foley catheter, thanks in part to aggressive palliative medication, but also in part because of Rebecca's “glass is full” spirit. There were smiles, sips of water (by Rebecca), and lightened hearts. She even walked down the hall, at one point doing a little jog with a pole ladened with intravenous fluids, TPN, and a unit of blood, as a girlfriend hummed the theme from the movie Rocky. It warmed our hearts, and a cell phone video captured the moment.
And for a while, cancer was nowhere to be found.
Addendum: Rebecca continued to battle her cancer courageously, and with the help of her oncologist, and seemingly against all odds, underwent a bone marrow transplant October 7, 2010, but subsequently died in January, 2011.