When President Obama called for “a new moonshot” to cure cancer in his State of the Union speech, I took it personally. This effort could take decades and billions of dollars. Is it worth it?
I will never know.
Last year at age 52, after an out-of-the-blue seizure, I was diagnosed with terminal brain cancer. My life span can now be measured in months, and the likelihood of my living long enough to see any positive outcome from the moonshot is slim. But 1 in 4 of us will be struck by some form of cancer, and it is the second-leading cause of death in the United States. As a result, finding a way to end the pain and suffering — and reducing cancer’s astronomical medical costs and lost productivity — seem worth it to this patient.
Until June 3, 2015, I was living a typical life in the Washington suburbs: commuting to a job that I loved at Gavi, the Vaccine Alliance, an organization that provides vaccines to children in developing countries. I spent free time at home with my wife and our three children, went to the movies, ate at restaurants, attended religious services and looked forward to a friend’s party or a vacation.
That all ended just as I was getting ready to head home from work that day. That’s when I suffered two massive brain seizures, the first of which was so powerful that it tore the tendons from the bone in my left shoulder. A colleague tells me that I groaned and slumped down a wall. Another colleague called 911, probably saving my life. Doctors later told me few people survive a seizure as powerful as the one that shook my body. And I had a second one on the way to the hospital.
It took more than a week for doctors at George Washington University Hospital to determine that the cause of the seizures was glioblastoma, an aggressive brain cancer that most likely killed Vice President Biden’s 46-year-old son, Beau, last year and Sen. Ted Kennedy in 2009.
While there are experimental treatments being developed for glioblastoma, a person with this killer has an average life span of about 12 to 18 months. I have now lived a little more than eight months with it, although my life is utterly changed from what it once was. I am no longer able to work or live self-sufficiently, as even getting up to use a bathroom is fatiguing. My balance is poor, and I have fallen down several times. Using a computer makes me dizzy. I rarely leave my family room or my house.
I am a naturally optimistic person, but I constantly wonder when my death will arrive. Yet in several key ways I count myself lucky because of what I like to think of as miracles, or fortuitous occurrences, that have given me the luxury — which many with brain cancer don’t get — of choosing how to spend these last months.
Miracle 1: The brain seizures saved my life. My doctors suspect that my cancer grew from nothing into a large tumor in a matter of weeks in May 2015, and it was pressure from it on my brain that caused the seizures. But the seizures saved my life because the cancer might not otherwise have been identified in time for me to undergo the radiation and chemotherapy that may have added some months to my life.
When I was brought to George Washington University Hospital, I was in so much pain that I was put into a medically induced coma. The doctors did not yet know why I had suffered the seizures, making proper treatment unclear. The doctors told my wife, Karen, that they did not know if I would be able to speak again, that I might awake in a vegetative state or severely impaired. But when I awoke three days later I was — amazingly — myself in cognition, clarity of thought and personality.
Over the next two weeks, I underwent multiple MRI scans, brain scans and other tests to figure out why I had had the seizures. Bleeding in my brain made it difficult for the scans to show the tumors — the large one and two very small ones connected to it. The focus at this point was on surgically repairing my left shoulder: My rotator cuff had been torn apart and the humerus shattered.
Treatment on my brain — surgery to remove the largest tumor — was being deferred. It was not yet certain that I had cancer — a biopsy was needed — and the bleeding needed to clear on its own.
An oncologist friend took my records to the cancer center at MedStar Georgetown University Hospital, where senior oncologists determined that I probably had glioblastoma. Time was of the essence, they said. They recommended removing the large tumor before it destroyed my brain. The smaller ones were inoperable but slow-growing.
I was transferred to Georgetown, and a few days later a neurosurgeon removed about 98 percent of the large tumor, which meant I now had more time and the possibility of other treatments.
All told, I was in a hospital bed for a month. Despite facing my own mortality, one thing that kept me optimistic was the love and support of family and friends, who would sit with me for hours every day, sometimes sleeping next to me through the night. I was home within three days of the brain surgery. My discharge July 3 — one month after the seizures hit — felt like my own Independence Day.
Miracle 2: The placement of my tumor may have been the difference between life and death, sight and blindness, movement and paralysis.
My tumor was in an easily accessible place for surgery, on the right front side of my head, just above the ear. This meant not only that surgery was possible — the tumor was near the surface, away from my brain stem and other vital areas — but also that I had a chance at survival for more than a few months — and, I hope, for a lot longer than that. It also meant radiation treatment could avoid parts of my brain that, if damaged, could leave me impaired — perhaps blind or paralyzed. Some patients are forced to either accept or reject radiation that will extend their life but leave them blind.
About two weeks after my brain surgery, I began a six-week course of daily blasts of radiation. Each lasted five to 10 minutes as I lay on a table with a robot arm hovering over me, my head held in place by a customized mask. I could sense the radiation in my brain, swirling after each treatment. Georgetown is one of the few hospitals in the Mid-Atlantic area that has a CyberKnife, a device that uses beams of high-dose radiation on a tumor. For the final week of my radiation series, I got an hour-long daily CyberKnife treatment. I imagined it was like using a delicate paintbrush to fill missing spots after painting a wall with a roller.
The goal in cancer treatment is to kill off 100 percent of cancer cells, but my oncologist told me the reality is that only about 90 to 95 percent of glioblastoma cells are destroyed. Even one remaining cancerous cell can grow quickly into the tumor that will kill me.
The protocol is to put patients like me back on chemo (by pill) to keep lingering cancer cells as weak as possible. I now continue to take chemo under different dosages and protocols to try to keep the cancer in check.
Miracle 3: Early in my treatment, I experienced excruciating pain in my left leg, a condition called deep vein thrombosis. The blood clots of DVT can be life-threatening if they travel to the lungs, brain or heart.
DVT is not uncommon among people who have surgery, are being treated for cancer or are immobilized. In my case, I hit the trifecta. The typical treatment for DVT is blood thinners. But because I had a brain bleed from my seizures, those drugs would be too risky. My only recourse was to keep my legs elevated and wait for my body to dissolve the clots, a process that typically takes months.
I kept my legs elevated nearly 24 hours per day. But I also did something my late grandfather, Rabbi Baruch (Rabinowitz) Robbins urged if I ever was in extreme need. I am a ninth-generation descendant of Rabbi Israel Baal Shem Tov, the 18th-century founder of the Hasidic movement of Judaism, and I am descended from other dynastic lines as well. Given this lineage, my grandfather told me, I could draw on the collected good deeds of our ancestors in asking for intercession. A religious person, I did this by praying nightly.
You might say that the brain is a powerful organ and that belief has the ability to affect the body. Or you might say that the good deeds of my ancestors had an impact. But I went from excruciating pain and swelling in my leg to no pain or swelling within two weeks. The doctors said they were amazed at the speed. I have had no problem with blood clots since.
Today, I am officially disabled, according to Social Security, and I almost always have to use a wheelchair to get around. Most days, I sit alone and read. It is a dull existence, but I am not in pain, and friends visit frequently. Most important, I get to spend important final time with my wife and children, who have been godsends to me, though my illness has complicated and severely affected our family life. In particular, my wife has had to make huge compromises in her work. It has been hard for all of us.
I am fortunate in having insurance to cover most of my extraordinary cancer-related expenses, which I speculate have been hundreds of thousands of dollars so far. I have a generous and compassionate employer in Gavi, which has kept me as an employee since I became ill and has provided generous disability coverage.
When President Obama revealed his moonshot initiative against cancer, I was electrified. While it won’t help me, I felt happy for other families that will face what I have encountered, and the initiative gives me hope for their futures.
And so I hope this effort will be embraced and funded generously. If it is successful, then a diagnosis of glioblastoma may no longer be a death sentence. Families may have a much better outcome than those whose lives are torn apart today. Let us help make the moonshot a blindingly daring and aggressive effort that will tear down the hopelessness that surrounds a cancer diagnosis today and pave the way for more effective treatments and better outcomes tomorrow.
Stern lives in Takoma Park, Md. His wife, children and many friends, colleagues and others will gather at Freedom Plaza on May 1 to participate in the Race for Hope to raise money for, and awareness of, brain cancer research.