Patients aren’t statistics. They are individuals, and as such they are not bound by the accepted rules of an illness. Survival is always a range, and some people do recover from illnesses considered “fatal.” I have long-term survivors of glioblastoma multiforme (GBM) in my practice, even though the majority of patients die within a year or two of diagnosis. Why some patients become outliers is often a mystery.
Knowledge and treatment options are continually changing and improving, so patients may get lucky. We may find a cure that will benefit them before they succumb to their disease. Yet the reality is that over the last twenty-five years, the improvement in survival for patients with high-grade gliomas and GBMs has been modest, without fundamental changes in the natural history of the disease.
We never want to extinguish hope, both for the patient and the practitioner. I want to believe that my patient will survive and be cured. I want to have hope as well, even when the survival data tell me otherwise. The survival data for AML with monosomy 7 carries a 6 percent five-year survival rate for all patients. Had Victoria known this, she would have focused on the six survivors, yet it is hard not to think of the ninety-four of the hundred who will die.
I spent the first weekend of the new year with my sister, catching up and reminiscing, and returned early Monday morning to meet Dr. O’Donnell. Anxious to hear more about Victoria’s illness and the treatment program in store for her, which to date had been frustratingly nebulous, I felt that if I could meet the doctor in person, I might establish a rapport, perhaps trade email addresses. I needed my sister’s blessing so that it would be clear to Dr. O’Donnell that my involvement was welcome and useful for her immediate family and also for our larger family, all of whom wanted information, felt starved for facts, and were hanging on every word.
Our brother-in-law, Gerald, sent me the link to a New Yorker article by Dr. Jerome Groopman describing exciting new developments in AML treatment. These treatments were leading to spectacular remissions and cures. Earlier on the phone, I had asked Dr. Fischer to test my sister’s blood for IDH1 status—if the AML was IDH1-positive, this drug could be curative. I had already contacted the drug company; they were aware of my sister’s leukemia and gave me relevant questions to ask. Apparently, City of Hope was registered to participate in a clinical trial of this drug but had yet to enroll their first patient.
When Dr. O’Donnell arrived in Victoria’s room, she was wearing rubber gloves and a mask over her nose and mouth. Her speech was measured and careful, and her large brown eyes had a sad, knowing look. She was the opposite of the typical surgeon—often in a hurry, exuding confidence, whisking into the room already thinking about the next task. Dr. O’Donnell was polite and considerate and examined my sister carefully, deliberate and unhurried in her actions. She answered Victoria’s questions, yet did not volunteer her own concerns. She was forthright, kind, and eminently practical. She seemed to be the perfect choice for my sister. I sensed this doctor genuinely appreciated Victoria’s compliance with treatments and willingness to follow her recommendations.
After they finished, I followed the doctor into the hall and closed the door behind me. I expressed my concerns about the lack of communication and explained that I wished to interpret the facts of Victoria’s leukemia to our family. She and I exchanged email addresses. The bone marrow results would be back soon, she said. These would include information about me and Caroline, along with the database of possible donors. Dr. O’Donnell agreed to check on the IDH1 status testing and said she would let me know the result. She acknowledged how difficult Victoria’s leukemia was to treat and cure, but told me that with transplantation, my sister had up to a 40 percent chance of survival, which was much better than the 6 percent I had previously believed to be the case. Not great odds, but a lot better than I had thought.
The next day, Dr. O’Donnell returned to Victoria’s room and informed us that neither Caroline nor I would be a suitable match for our sister. She also explained that Victoria’s IDH1 status was negative, so the new trial drug was not an option. On her rounds the following morning, she broke the results of the database search. The provisional results indicated that of the twenty-two million potential donors tested, there was only one possible match. She apologized for the disappointing news, saying that they would keep searching for potential matches and might have some other possibilities, so we should not give up hope. While neither Caroline nor I would be suitable donors for Victoria, in a strange twist of fate, the tests showed that we were both matches for each other. Caroline was devastated by this news, having wished that she could become Victoria’s donor and save her life. I was stunned and scared, knowing that the search for a donor in the wider world would prove to be a game of long odds.
I have now been here for one and a half weeks. I’ve done my second round of chemo and a repeat bone marrow biopsy (my third), and next Wednesday we see if I am in remission or not. My first biopsy showed that my marrow was so caked with disease that it couldn’t even aspirate. The second was far easier, but the blast numbers were still very present.
Now I am praying for zero—for remission. If that is my good luck, I will get to go home for one to two weeks before another three to five weeks for the apparently grueling transplant.
Yesterday morning, Dr. O’Donnell came in and remarked, first thing, “Your siblings match each other but not you.” What a cruel pronouncement. Crazy cruel. Dr. O said that when she started doing this, if you didn’t have a sibling match, you were out of luck. Good thing it is 2015, so there are other options. Now I am praying for (1) remission so I can go home and regroup for a short time and (2) a match! A perfect, excellent match with a healthy p53 gene!
So there we have it.
Valerie [a close friend] wrote me a lovely prayer. She said my trials and tribulations “now amount to a cliffhanger,” which inspired her to write the following:
I ask for a most benevolent outcome that the perfect and ideal donor for my bone marrow transplant be found speedily and may the results of the procedure be better and easier and more powerfully healing than I could hope for or expect.
Love that! I’d also like to add that I get one to two weeks off in between so I can recapture my spirit (being with my men) and my energy (being out of the hospital!) first. If I am not in remission, I’ll have to go straight into more chemo and/or radiation—which is concerning in terms of energy and also secondary cancers …
I really don’t want to be a watched pot, forever worrying about my body. I say no more cancer, ever. I like what Nick said, “The third time is the charm, Mom.”
—JANUARY 1, 2015
There is a lot of hurry up and wait in this dance. Dr. O’Donnell came this morning with no news. Apparently, the matching folks were not working yesterday or on the first. No surprise; it is not the best time of the year to be sick! Now we may need to wait until Monday for any news of a match …
I’m doing okay right now. I woke up feeling awful, but now I’m feeling well enough. I woke up thinking I was going to throw up again and feeling very congested. Now, I am better, except that I am bored and going ever so slightly out of my mind. As I remarked to Pat, “Why can’t people be in an induced coma for the wiping out of the bone marrow part?” Although I have heard that it can be the posttransplant part that can actually be the most challenging—the period that brings challenges with graft vs. host disease. I guess my rash could be seen as a preview of things to come.
I am just really hoping that:
• I’m in remission—can go home and snuggle with my boys for a bit and avoid more chemo and radiation, which is not great for “secondary cancers,” plus will make me weak.
• We find a great match ASAP. No more of this torturous waiting!
I am grateful for:
• The kind nurses caring for me.
• My amazing, loving, and supportive husband who just went off to Target to try to find me sleep bras! (That’s much worse than asking him to buy tampons at CVS.)
• My incredibly brave and strong boys.
• The kindness of family who flew in to help—Deanna, Joe, my mom, Caroline, Gerald, Cass, and now Jody, with many more standing by.
• And friends—so many have been completely amazing. Alison, Diane, Jen, Heather, Mira, Lisa D., Cat Gerst, Laura and Scott, Trish, Jenny, Holli—so, so many!
—JANUARY 2, 2015
Victoria had entered a maze with too many dead ends. Paths to a cure were gradually being closed off, choices becoming limited. While I was inspired by my sister’s optimism, I knew that it would not be enough to counter the losses she was facing. As much as I tried, I could not push away my increasing sense of dread.
During my second visit to City of Hope (shortly after her transplant), a North Carolina neighbor who serves on the hospital board arranged a tour for me of the research facilities and the adjoining hospitals. I was enormously appreciative of the opportunity. Patients come from all over the country for the best possible treatments; staff often drive hours to and from the hospital to care for their patients. The physicians and researchers have an almost religious conviction to their mission and vision.
What I had initially perceived as coldness from some of the physicians I began to recognize as self-preservation. I suspect Dr. O’Donnell knew that my sister was likely to die before she had even met her. Despite this, she was invested in Victoria’s care, bringing her experience and expertise to bear. How hard would it be to grow attached to patients and their families, only to lose so many of them in death? Even with the most heroic efforts and state-of-the-art medical treatments, many patients succumb to their illnesses and die. The chance of a breakthrough and the desire to ease suffering propels doctors like O’Donnell. For the treating physician, there is always another patient who needs help, another family with questions, another experiment to run with the possibility of a cure.
During Victoria’s stay, City of Hope staged a reunion of leukemia and bone marrow transplant survivors, filling the garden patio with grateful former patients and their families. My sister watched from her window, inspired by what she saw playing out beneath her, a thin pane of glass separating her from the freedom from disease she craved.
The question with no good answer hangs in the air: why did they make it while I might not? How many want to ask: why did I get leukemia in the first place? Most of those patients and their families had no familiarity with leukemia upon the diagnosis and found themselves thrust into a world of medical chemistry they had no desire to enter. One of the greatest things that came of the City of Hope reunion was the connections the patients made with one another, as well as with their own families. The renewed relationship I had with my sister was uplifting and full of meaning. With cancer, priorities shift suddenly and small gifts of time together become more important than anything money can buy.
Caroline and I had desperately hoped to be matches for Victoria. The fact that she would not be the donor was a blow for Caroline, as mentioned, but it crushed Victoria as well. One of the hardest things about mortal illness in a family member is the helplessness one feels as everything unfolds. It’s like watching a slow-motion car crash: your impulse is to jump in and do something, yet you find yourself incapable of changing the hands of fate. Much as we want to intervene, we feel powerless against the seeming inevitability of a disease’s progression.
My ability to explain things to my family allowed me to feel useful. Caroline now felt that she had nothing to offer Victoria, so the idea that her cells could save our younger sister’s life had been deeply important to her. The loss of that hope felt like a great personal failing. When we were informed that Caroline and I were matches for each other but neither was a match for Victoria, insult was added to helplessness.
On finding that she was not a donor, Caroline went to work contacting charitable Jewish bone marrow donation organizations, including Gift of Life, which exists to match patients in need with registered donors. She was all set to run bone marrow drives through her synagogue, and plans were rapidly developed to run drives at the boys’ school in Los Angeles as well.
These plans never took off because, despite the willingness of all participants, it became clear that the odds of finding a donor this way were infinitesimal. Also—and this became the biggest factor—the timing wouldn’t work. Dr. O’Donnell explained that by the time we organized a drive, got the samples, and had them evaluated, Victoria would likely be beyond the window for transplantation. The longer she waited, the more likely it was that her leukemia would progress or that she would develop superinfections due to a prolonged state of impaired immunity. If she developed even one of these infections, transplantation would be eliminated as an option altogether.
Nonetheless, a call went out to our extended family and to our half-sisters, Madeleine and Alex, who immediately volunteered to be tested. Both sisters turned out to be matches for Victoria. Initially, the doctors at City of Hope were leaning more toward Madeleine than Alex, but all communication about possible donors was painfully slow and we would often wait several weeks for answers to our questions.
To our surprise, in late February, Dr. O’Donnell asked for Victoria and Pat’s son Nick to be tested. He was fifteen at the time.
Nick is the older of Victoria and Pat’s two sons. He is quiet, sensitive, and extremely kind. He was acutely aware of the seriousness of his mother’s situation. Both boys were trying to adapt to her long absences. Pat and Victoria struggled to keep their home as normal as possible during her illness, but as treatment and hospitalizations dragged on, this became a tremendous challenge. Pat divided his time between home and hospital while his work and health suffered. Without the generosity of friends and neighbors, these months would have been close to impossible, but the boys also met the challenge, becoming more self-sufficient and considerate. Nick stepped up his role as a big brother to Will, and together they helped their dad keep the household running.
Both Pat and Victoria were initially worried when Nick was mentioned as a possible donor. As a fifteen-year-old, would he be emotionally able to handle this? Would he be devastated if he were found not to be a match? What if he was a match and the transplant went forward and failed? Would he forever carry a burden of guilt and a sense of responsibility? What if Nick was injured in the process of harvesting his bone marrow? It is hard for a parent to expose a child to pain and risk for the parent’s benefit.
While Nick would not be a complete match, recent data have shown that haplotypes (half-matches) can be effective donors. Plus, there is a developing appreciation that young males often make the best donors since they produce large volumes of healthy stem cells. In the past, donors were put under general anesthesia and then had up to forty bone marrow biopsies taken from their pelvis. There were risks of bleeding, fracture, nerve injury, and complications related to the anesthesia. The procedure was notoriously painful. Today, donors receive daily injections of Filgrastim, a drug that stimulates the production of white blood cells, for a week, followed by up to six hours of plasmapheresis, in which the donor’s blood is circulated through a filtration system that captures circulating stem cells. These are concentrated, saved, and then infused into the recipient after their own marrow has been destroyed with powerful chemotherapy and high-dose radiation.
Dr. O’Donnell pointed out that most people end up with a few possible matches, but a few unlucky patients end up with none. We waited for over two weeks for news about the lone potential donor. It later became clear that the potential donor was not interested in participating. Since this is all done with complete anonymity, we were not able to contact or learn anything about her or him. We did not know the person’s age, sex, location, or any other identifying features.
Almost ten weeks in the hospital. Twelve weeks since I went to the ER with, perhaps, the flu! That is a lot of time alone. It is wearing on me more now. Perhaps because it has been so terribly long, perhaps because the transplant is drawing nearer (I think!). I am definitely stru
ggling more. It is a jumble of so many things.
So much time away from my family. It is getting harder to turn it around and see the beauty around me and feel the gratitude. Right now, I feel incredulous, still astonished that this ever happened, distinctly aware of how many blows there have been. One of my friends said I was going to suffer from posttraumatic stress disorder when this was all over since it started with such a bang and there has been so little opportunity to process it all.
How is it possible that Caroline and Jody match each other and not me? How is it possible in a database of twenty-four million that there was only one potential donor match? And how is it possible that this one potential donor is not available for further testing when I need him or her?
I will just have to trust my doctors. If they choose haplo and I have graft-versus-host issues, that will be what is needed. If I have to take handfuls of immunosuppressing drugs all of my life, so be it. I will be here and that is all that matters. I will do whatever it takes. I am determined to be here until I have reached a ripe old age. I have so much left to do. I have roles to play, books to write, projects to produce, but most of all, people to love and nurture.
I am nowhere close to done. Not an option. Wow, what a mosaic of fear, shock, loss, strength, confidence, love, and gratitude I am right now. A smorgasbord of emotions, many of them a lot less positive than usual. But as my acting teacher Rudi Shelly used to say: “Even Plato had occasionally to go to the loo.” I’ve felt amazingly positive and strong. I still do. But other feelings are definitely creeping in.
—FEBRUARY 21, 2015
Can I just say the food delivery people drive me crazy? The forced chipperness is super-annoying. I like one of the women—she just comes in quietly, says good morning, and sets down my tray. I so appreciate her. The hairnet dude this morning just entered with a “Good morning! Well, you’re up bright and early this morning!” Really? It’s a hospital, dude. It’s 7:30 a.m.! Most of us are up at 4 or 5. I know he means well, but please, leave me alone! Of course it is far worse at the City of Hope when they enter, announcing, “Room service!” They check my name and date of birth as if I was going to sneak into someone else’s bed and eat their food? Oy.
Grief Connects Us Page 7