[Download A Father's Fight
Hanne Rylaarsdam
Those words of my father are the last thing I remembered as I went into surgery. I would think back on them often in the years ahead, as we dealt with his own genetic legacy of cancer and its relationship to what Gertrud and I had gone through.
BRCA mutations leave women with about a 70% chance of breast cancer and up to a 40% chance of ovarian cancer. Many female carriers will ultimately choose to have their breasts and ovaries removed by their mid-forties. What is less well known is that BRCA mutations do not spare men, increasing their risk, even at a young age, for breast, prostate and pancreatic cancer.
Life had barely returned to normal when, during one of our weekly calls, my father mentioned that he was having a bit of stomach trouble. Healthy all his life and with no reason to worry about what seemed to be indigestion, he did not think much of it. My father was then 78, and in men his age, digestive problems are common. But I did not think of ulcers or constipation. My mind went directly to pancreatic cancer.
Pancreatic cancer is much feared for very good reason. It is one of the deadliest cancers we know, partly because it is rarely detected early. About 55,000 men and women present each year with pancreatic cancer in the U.S., and 44,000 die from it. Only about 5,000 of these cases are discovered at an early enough stage that surgery is still an option and a chance for a cure, but even among those, barely 1 in 3 will survive five years beyond diagnosis.
For someone with a BRCA2 mutation, the risk for pancreatic cancer is up to 10 times higher than for those without the mutation. Pancreatic cancer is the third most common cancer with BRCA mutations for both men and women, and many women with BRCA2-related pancreatic cancer already have had breast cancer.
Knowing that Papa was a BRCA2 carrier drastically raised my concern that this could be pancreatic cancer, but in 2013, at the time of his diagnosis, there were no recommendations to regularly screen someone with a BRCA2 mutation for pancreatic cancer. My own circumstances and my knowledge of the mutation were undoubtedly part of what saved him.
The next morning, I woke up to a stunning Swiss summer day. Papa and his second wife, Marietta, sat in the garden, surrounded by birds humming and deeply colored summer flowers. Grabbing a cup of coffee, I joined them. It was time to make a decision.
But his journey did not end there. Within two years, the pancreatic cancer was back, requiring further chemotherapy and then two courses of radiation therapy. Thankfully, each course of treatment brought his tumor back under control, without more surgery, and he has now marked the five-year anniversary since his diagnosis.
We must hope that, in the years ahead, more of the public and the medical profession will become aware of the link between BRCA mutations and pancreatic and prostate cancer. Many more patients could also benefit from the sort of research and treatment that helped to save my father. Indeed, since his diagnosis, an entirely new type of therapy has been developed and approved, called PARP inhibitors, which are specifically tailored for those with BRCA mutations.
I am lucky to have had many more years with my father since his diagnosis, and this gift has confirmed my belief that there is always hope for something new to alter our fates in dealing with cancer. But I could not end his story without reflecting on what he did to make this happen, a lesson in what each of us can do to anticipate and fight cancer, with or without genetic predisposition.
Papa was seventy-eight when diagnosed. Until then, he had exercised almost every day of his life and eaten a balanced diet. These habits may not have prevented his tumors from growing, or occurring in the first place, but they clearly helped him to survive the blows of treatment.
A friend once told me that to win the race you have to stay in the race. Dealing with metastatic cancer is an ongoing battle. It requires steadfast support, resources, stamina and, most of all, courage and hope. There are endless setbacks and bad days. But seeing my father emerge from his struggle, my own blue eyes meeting his, I am proud. We are now connected by more than blood and DNA.
Note: This article was originally published in the Wall Street Journal in 2018. Every day we are faced with the reality that cancer remains an often incurable illness. Mr. Munster passed in May of 2019 after surviving six years. He continues to be an inspiration as Dr. Munster and her team works to develop new and improved treatments.
Attorney Jeff Wolf, of the Massachusetts Law Reform Institute, explains that what has long guided the courts in their handling of custody and child support cases was this imperative: "Do what's in the best interest of the child." This constituted the standard for the state's 1998 Child Custody Presumption Law. Legal priorities aren't necessarily set in stone, and many argue that by trying to change the standards, the "Fathers' Rights" movement is actually attempting to put a parent's right -- the father's -- above the child's.
Advocates like Jeff Wolf believe the current standard should not change for this very reason. "The Massachusetts Supreme Judicial Court articulated that in custody cases, the most pressing issue is how to provide children with the most stability possible given their situation," Wolf explains. Not all parties agree with Wolf's assessment. Groups advocating for the rights of non-custodial fathers have gained momentum since the early 1990s. They work in myriad ways from outrageous antics to mainstream lobbying.
In England, Fathers 4 Justice employ guerilla theater tactics to get their point across. The group, recently profiled in a New York Times magazine piece by Susan Dominus ("The Fathers' Crusade," May 8, 2005) is known for its dramatic actions. On the group's behalf last year, former housepainter Jason Hatch scaled Buckingham Palace dressed as Batman. From there, he unfurled a banner in support of fathers' rights -- "Super Dads of Fathers 4 Justice" -- and spent more than five hours perched on a ledge near the palace balcony. Although arrested once the stunt was over, Hatch was released without ever being charged with a crime. He even got his ladder back. Before the Buckingham Palace protest Prince Charles was quoted (in London's Daily Telegraph) in support of fathers' rights. He said he felt judges "favour mums when deciding custody of kids -- even when many fathers were not to blame for the split." The prince made this remark when speaking with a newly divorced Navy officer on HMS Belfast in London.
Jamil Jabr, head of Fathers 4 Justice, has recently begun a United States branch called Fathers 4 Justice-US. In a reconnaissance trip to New York, members of the organization scouted out sites for an action. While in the city, they were trailed by the head of New York's terrorism intelligence branch. Says Jabr, "He had FBI connections and orders to make sure that there would be no Buckingham Palace-type incidents." Although it is dubious whether such outrageous guerrilla theater style tactics would prevail in post 9-11 New York, it has been widely reported that the father's rights radicals went out for a beer with the men assigned to watch them.
Meanwhile, others like Ned Holstein, founder of the Boston-based organization Fathers and Families use more conventional means to push the fathers' rights agenda along. With downtown Boston offices, a membership base of about 2,000 and an annual budget of $130,000, his group focuses on lobbying. His was one organization that helped get family law initiatives on the Massachusetts ballot this past November. Massachusetts' voters weighed in on the custody issue by answering non-binding referendum questions in one hundred communities across the state. Voters, asked if they would endorse a law requiring judges to presume shared physical and legal custody of all minor children in all divorce cases unless a parent is proven unfit or unable to care for the child, offered resounding approval for the suggested measure: eighty-five percent.
Massachusetts isn't the only place where such lobbying is taking place. The Indiana chapter of the Children's Rights Council (a fathers' rights group) urged that class action suits be filed nationwide to call for a presumption of joint physical custody. Iowa Governor Tom Vilsack signed a presumptive joint custody law in May 2004. Although New Mexico's custody laws determine joint or sole child custody according to the best interests of the child, they plainly state this bias: "There is a presumption that joint custody is in the best interests of the child, unless shown otherwise." In all, 11 states and the District of Columbia have a legal presumption in favor of joint custody. Only three states make this presumption even when the parents contest the arrangement; eight states apply such a presumption only when both parents are in agreement.
Some conservative women are weighing in to support fathers' rights too. Wendy McElroy, a columnist for FOX News, believes in fathers' rights, wholesale. Not only does she support shared custody, she recently wrote an editorial about a birth father's right to his biological child (with an ex-girlfriend he hadn't known was pregnant in the first place). In the essay, she cited the father's finding support for his case from the National Coalition for Free Men, an organization that lists at the top of its list of current activities an attempt to abolish the Minnesota Battered Women's Act. The organization wants the state to take a brand-new tack, one that "utterly discounts and discredits the old 'women good, men bad' model and forthrightly recognizes instead that domestic violence is a shared problem between men and women."
These groups attempt to level a playing field they believe is skewed against some men by widening that description to suggest actual discrimination against all men. In a 2000 article for Salon, author Cathy Young chronicles the way Dianna Thompson became executive director of the American Coalition for Fathers and Children. "Thompson was galvanized into activism in 1992 when, as a result of an overhaul of California's child support laws, her husband's support payments for two children from his first marriage were tripled. Thompson, a mother of five, says that as a result of the increase, her family was faced with losing their home." In both of these scenarios -- the biological father so distanced from the pregnant mother that he wasn't aware of the pregnancy and the man charged higher child support payments -- men are presented as innocent victims.
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