I’m here and I’m staying here. I am one of the miracles, and I thank the heavens for my village for making it so. I’ve got this. What is this “strength” I have of which so many people speak? I don’t feel strong, but I do have blinders on—one goal only, which is to be fine. I suppose this makes every single moment of upheaval easier, because no matter how hard the moments can be (and this is an understatement), if it’s just today’s challenge on the way to the goal, then you just do it, you just get through it!
Any one of these enormous challenges could have slayed me, but instead, you just do what needs to be done—ride out the 103° fever, being packed on ice! Then test after test. I’ve fluid in the lungs, the rash, the itching—you just go through it because it’s the way to recovery.
I request a most benevolent outcome that the miracles continue in my recovery from my illness.
I request that my donor cells calm down and cease attacking my skin or anything else,* realizing they are in a safe environment and all is well. (*Except for any future cancerous cells, which they are encouraged to obliterate.)
I therefore request that the GVHD [graft-versus-host disease] calm down, and that I be treated and weaned off all my medicines!
I request that I feel increasingly like myself! And that I have no ongoing residual challenges or side effects.
I request perfect health and excellent energy.
I request a continued miracle in health that is better than anyone could ever hope for or expect.
And I am overflowing with gratitude for the help, the support, the love, that has gotten me this far. Thank you!
So glad Pat is here. So, so glad. Can’t stay awake, but so glad. Grateful.
—MAY 29, 2015
July. Day 82.
It’s a weepy place to live when you see joy everywhere.
I am feeling so happy. I am very shaky from the medicine changes but feeling great and happy. Tired of my same psychology. I feel more like a patient today, but I don’t care. I’m waking up way too early again. But yesterday and today, I had the nicest time working and playing with my boys. I love them so much.
—JULY 1, 2015
Happy 4th! A holiday where I’m with my family, not at Saint John’s or City of Hope. How great is that? I’m reading Dr. Bernie Siegel’s Love, Medicine and Miracles. I weep on almost every page, as it all resonates so deeply with me.
My tears are those of recognition that, yes, I am one of [Siegel’s] “exceptional patients.” I came upon this all on my own. I was a sponge for all that wisdom, for meditation, visualization, for self-empowerment—anything that would assist me in obliterating my cancer, learning from it, fully embarking on my life and my loves.
I’ve never thought of myself as spiritual. I’ve waited on reading any numbers predicting my future. I’ve always known that I would be okay.
Yes, there have been moments of fear—how could there not be?—but in my heart, I know I’m fine and that I will live a long and joy-filled life.
I choose life and joy and love. Death is not an option.
—JULY 4, 2015
At about day sixty-five, Victoria’s platelet count began to drop. The last time she checked, it was 231,000, which is normal. A normal count would be in the range of 150,000 to 450,000. Less than a week later, her count fell to 136,000. By July 9, her platelets had dropped to 90,000. Dr. O’Donnell decreased the antirejection drugs, hoping this would reverse the slide, but the measure didn’t seem to have any effect. On July 14, Victoria’s platelet count plummeted to 54,000. She received a four-hour infusion of immunoglobulin (IVIG) in the hope that this would encourage her count to rebound. While Dr. O’Donnell had indicated the decline in platelets could be from drug reactions, she did not mention to any of us that Victoria’s leukemia might have returned, as a dropping platelet count is one of the first signs. This, it turned out, was indeed the case. On July 17, Victoria’s platelet count dipped down to 41,000. A peripheral blood count revealed a return of blasts, now as high as 20 percent.
The leukemia was back and with a vengeance. Previously, 100 percent of Victoria’s bone marrow cells were from Nick; now that number was at 90 percent, and the remaining 10 percent of the white cells in her blood contained her own DNA. These were the cells from her original leukemia, which had survived all the brutal chemotherapy, the whole-body radiation, and the bone marrow transplant. They were roaring back to life, seemingly unscathed. Dr. O’Donnell pressed on, starting my sister on a new type of chemotherapy called decitabine, with the aim of keeping regrowth of her leukemia in check. They could no longer treat her with new or potent chemotherapy drugs given the tenuous hold of her transplanted cells. Aggressive treatment would kill off these newly arising cells and, with them, Victoria.
A week later, she texted me: “I’m scared, my brother. But I still feel determined and strong. I’m not going down with this crappy disease. Not an option. Not how I expected to spend Day 97 … Think good thoughts for me, and please tell everyone all I want to hear is how strong I am and how I’m going to beat this again, but for good.” That night, after they cut back her immunosuppressing drugs in the hope of stimulating graft-versus-host attack of Nick’s transplanted cells against the resurgent leukemia, Victoria spiked a fever to 102.3°.
On day ninety-nine, just before the long-awaited discharge home, Victoria was back in the hospital. “Doing so-so, to be honest. Definitely freaked by new development, and achy too. I will not accept defeat, but I am scared.” She was admitted through the ICU and started on broad antibiotics for high fevers and a bladder infection. Her fevers rose as high as 103.5°.
I texted her back: “You inspire me. I am trying to bring your positive attitude and courage to my patients. It is very helpful.”
She replied: “I could see being beaten down from this, and I see how some of those people don’t make it. That’s not an option for me. I’ve read a lot of inspirational books I can share with you. Do you know Dr. Bernie Siegel? He has some useful things to say.”
By this point, the fevers were beginning to trend down, but the blast count was hovering around 36 percent. They sent her home after the first round of the new chemotherapy to get some rest and to have a break from her seemingly interminable hospitalization.
I remember saying to my wife, when Victoria broke the news over the phone that her leukemia had returned, “There is no way out of this.” Yet people were rallying, digging in for a second battle.
On a return visit to City of Hope, Victoria’s platelet count had decreased to 13,000. One morning, she thought she was the recipient of a miracle when her blood test came back with 0 percent blasts, but when the test was repeated, the numbers showed 37 percent. The miraculous absence of her leukemic cells was most likely only the result of a laboratory error. She completed her second ten-day cycle of decitabine at home in Santa Monica, and her blasts gradually came down to 24 percent. The idea was to put her into a less acute state, a sort of chemo limbo land, where she would live until a better strategy arose.
Victoria began throwing up on September 5 and was running fevers from 100° to 103°. “Feel horrible … this is so old,” her text read. On the eighth: “Turns out I have sepsis. Bacteria in my blood. But feel much better after steroids. Need to raise my blood pressure. Jeez. What a thing.”
She had been readmitted to the ICU in septic shock and was administered Neo-Synephrine, a powerful blood-pressure-supporting intravenous infusion. They changed her PICC line but felt that the sepsis was from E. coli. Victoria rebounded from the septic shock on broad-spectrum antibiotics and blood pressure support. Her liver tests were elevated, suggesting organ damage as a result of the sepsis incident. Her low blood pressure during the episode of sepsis and the resulting poor perfusion of circulating blood to her organs was the likely cause.
That weekend, Pat took Nick and twelve friends out for Nick’s sixteenth birthday. Victoria was stuck in the hospital, but she looked forward to the boys visiting before the sleepover party. She was dete
rmined to make it back home as planned early that next week. This was her tenth month of being critically sick; she missed her family desperately. The following Monday, Pat would make the long drive back to City of Hope after he dropped Nick and Will at school. His hands were full with a bunch of teenage boys over the weekend, camped out on the floor of their den, slumbering late into Sunday morning.
Victoria was starting to feel better, despite spiking fevers greater than 103.5°. Because of my sister’s general improvement, Dr. O’Donnell moved her from the ICU to a regular room, with plans to discharge her home in the next few days. She wanted Victoria’s fevers to abate, with the plan of administering home intravenous antibiotics through her new PICC line.
Late Sunday night, I texted: “Good luck with all that. I’m thinking a lot about you.”
She replied: “Thanks.”
“Hang in there, Toria,” I responded. I didn’t realize that my wife had sent a series of texts to Victoria earlier that evening. They were talking about Nick’s party and how the silver lining might have been that she was also going to miss the cleanup part of it. “Guess so. I’m okay, just tired of it all.”
The next day, while I was seeing patients in my office, Pat sent me a text: “Sit down. Victoria passed away this morning. Totally unexpected. Please tell your family. I am going home to tell the boys.”
Victoria was beginning to feel better after her episode of septic shock. She was regaining her appetite and had eaten her breakfast. At 7 a.m., the nurse came to administer her scheduled medications, which my sister took without difficulty. When the nurse came back to check on her, she was unresponsive. They called a code and did CPR, but they were unable to resuscitate her. She was pronounced dead shortly thereafter.
Less than six months earlier, Victoria had written
Such an odd state I’m in. I feel like I am treading water, neither here nor there…. Being outdoors, breathing fresh air, feeling the sun beating down on me, listening to the occasional splash in the pool and the constant flow of the fountain at my right. Life is very good, very sweet here, indeed and all I want is more of it. Life. Sweetness. More sun, more breeze, more joy.
—MARCH 26, 2015
When Victoria’s leukemia returned so early after transplant, she was doomed. A search of the literature on survival rates after early recurrence of AML (defined as being within six months of transplant) quotes 95 percent mortality within one year. Others cite a 4 percent three-year survival after early relapse. Victoria had an extremely early recurrence at two to three months posttransplant. The new chemotherapy was a temporizing measure. Dr. O’Donnell spoke of new protocols and experimental treatments, but in truth, they had very little left to offer. My sister’s best shot for survival had been transplant. When that failed, there weren’t any other good options.
Dr. O’Donnell explained that Victoria had likely died of a cardiac arrhythmia brought on by damage to her heart muscle as the result of low blood pressure from the episode of septic shock. This was unforeseen but was also not preventable. The morning of her death, Pat was stunned and felt that he hadn’t seen it coming. He asked me whether an autopsy would be useful, but on speaking with Dr. O’Donnell it didn’t seem that it would yield any useful information, so we did not request that one be performed.
In many ways, I am glad that my sister did not know that she was about to die. She was spared a prolonged decline into disability in which decisions to abandon treatment would have needed to be made. But her reluctance to face the implications behind her leukemia’s return denied her an opportunity to discuss the possibility of death with her family or the chance to express specific concerns and wishes. Because everyone was intent on cure and survival, her death came as a shock, whereas in reality, death was the most likely outcome. I’m sure that Dr. O’Donnell knew this, but I imagine she was torn.
Was it her job to confront Victoria with the prospect of death, and a death that was fairly imminent, thereby extinguishing my sister’s hope for survival? If it weren’t for the arrhythmia, would Victoria still be alive today? This, too, gives rise to other questions. At what cost? Even with survival from leukemia, in the best of circumstances, Victoria would have been at risk for secondary malignancies, not to mention the risk for infections arising from her weakened immunity. At this point, however, she was unlikely to survive at all, given her early recurrence after transplant. I suspect that Dr. O’Donnell would have begun to delicately map out the reality of Victoria’s predicament once further treatment did not produce results, and perhaps Victoria and her family would have had the opportunity to say their meaningful goodbyes.
I called to thank Dr. O’Donnell shortly after Victoria’s death. She and I both cried, each of us feeling our own pain and a profound sense of defeat. I had lost my sister; Dr. O’ Donnell had lost her patient. She had done everything she could to cure Victoria, but in the end her efforts had not been enough. We simply are not yet there on the frontier of cancer cures and medicine.
I have been there many times myself: for all the new technology in the operating rooms and the best of intentions, I frequently come up short. While I know it is the cancer we are fighting and that ultimately results in death, it is hard not to take this failure personally. Just as Pat and his family were running “what-ifs” through their heads, so, too, were Victoria’s doctors and medical teams. At this point, despite all our knowledge and efforts, we are often powerless to solve some intractable problems or to reverse terrible illnesses. It is our hope that a cure for this form of leukemia will be found. Childhood leukemia used to be a universal killer, but now it is one of the great cancer success stories. I can only hope that the same gains will be made in the treatment of acute leukemia in adults and in other aggressive forms of cancer.
I was thinking back to a day not so long ago (well, preleukemia), probably last October—I was at one of my kids’ soccer games and someone came over, said hello, and asked how I was and how my acting career was going. It was actually going extremely well and I felt so happy!
I was about to get things moving again (ironically, right when this happened), but I didn’t say anything like that—instead, I found myself laughing since I was literally sitting right next to Jodie Foster (a completely lovely devoted fellow mom at my kids’ Westside LA school). I just found myself thinking of that moment and realizing I am forever altered by what I’ve just experienced. In a world where a beautiful twenty-seven-year-old dies from this nasty disease, I am in the fight of my life. And glaringly confident that I am making it. But it’s the same world where a fellow seventh grade mom just died of thyroid cancer. I didn’t realize that could kill you. I’m in that world, and I realize that someone’s celebrity—which used to intimidate me—is so unimportant. When people are capable of such love and generosity in helping my family, none of that seems to matter. I certainly don’t care anymore. You’re more successful, you’re less successful, it’s all so random anyway. Some of the most talented people I know never did all that well. It’s all so unimportant to me now.
—MAY 15, 2015
Two hundred and fifty people came to pay their respects to my sister and her family at Casa del Mar in Santa Monica nearly a month after her death. The memorial was nondenominational, although there were references to Judaism, Catholicism, and Buddhism made during the service. A fellow City of Hope patient who had successfully undergone bone marrow transplantation himself made his way to the stage. His name was Bob, and to most of us he was a complete stranger. He looked frail as he stepped up to the microphone, but his brave act was not lost on any of us. He spoke in a quiet voice, deferential and full of great respect for our family.
“Perhaps I knew Victoria for a shorter time than anyone else here. I met with her and Pat for a few hours, encouraging her about her upcoming bone marrow transplant at City of Hope. I, too, had AML leukemia and a transplant at the City of Hope. I said there were ways of negotiating the protocols, like how they wanted to wake you up at 4:30 a.m. to ask how well you w
ere sleeping. ‘I was sleeping just fine, until you woke me up!’ I pointed out. I had them put a sign on the door: ‘Do not wake until 8:00 a.m.’
“During those few hours I met with Victoria, I was impressed by her positive attitude, her warmth, and her spirit. She was a shtarker, and for those of you who don’t know Yiddish, it means a fighter, someone you don’t mess with.
“She reminded me of a character from the play Our Town. Emily is a young woman who has died in childbirth and is looking down on the significant moments of her life from the beyond. ‘It goes by so fast, we don’t even have time to look at one another. Does anybody on earth realize how beautiful life is, while they’re living it? Every, every moment?’ Now, that’s tough, because there are lots of annoying moments. But maybe if we think of Victoria, we can have more moments of grace and generosity and strength.”
I walked out of the hotel and onto the terrace at Casa del Mar, drenched in bright sunlight, the long blue-gray horizon of the Pacific beyond. I took a deep breath of air, appreciating the scene all the more when I thought how my sister would never experience these simple joys again. In the rush of our daily lives we take these gifts for granted, or worse, reduce them to irritations and distractions. Traffic, abrasive people, unanswered messages, deadlines. What my sister would have given to be walking barefoot in the sand, inhaling the sharp, salty air!
Back in the ballroom, Victoria’s warm and graceful spirit brought the speakers together. Her friends filled the room with anecdotes, memories, reflections, laughter, and tears. Kathleen Marshall, a classmate from Smith and herself a theater director and producer, reminisced about their college days:
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