My Wife's Fight Against Cancer Inspired 38,000 People to Raise Millions for Research
It was 15 years ago this month, but I'll never forget those words. When my wife Jen and I asked her oncologist about our plans to start a family, he calmly replied, "Well, I wouldn't do so unless Dave is prepared to be a single father."
About 50 percent of all people with cancer have a rare type, like the one Jen was fighting.
Time stood still. The danger crystalized — we were in a battle for my beautiful bride's life, and the odds were not in our favor.
We felt every emotion expected. Anger, sadness, confusion, frustration, and especially fear. But we made a very intentional choice to take that fear, put it to the side, and do everything we could to live our lives together to the fullest.
We focused first on Jen's health and learned everything we could about MFH Sarcoma. I was with her every step of the way — for hundreds of medical appointments, six intense surgeries, and twenty different types of chemotherapy. During such a challenging time, our choice to reject fear allowed us to live our best lives. Our careers blossomed, we enjoyed several international vacations, and Jen inspired thousands of fellow patients through her blog and speeches.
When we researched treatment options we learned that Jen was not alone. About 50 percent of all people with cancer have a rare type, like the one Jen was fighting. However, rare cancers don't get the funding they desperately need so effective treatment options are hard to find. The lack of funding felt unfair — and urgent. We didn't worry about everything that can go wrong when starting a new venture. Instead, we jumped in head first and convinced a small group of friends and family to ride stationary bikes with us to raise money for rare cancer research.
Jen Goodman Linn, riding a stationary bike for Cycle for Survival.
(Courtesy David Linn)
From those humble beginnings, Cycle for Survival grew steadily. After starting from scratch, Jen and I ran Cycle for Survival on our own for two years. We quickly realized that if we wanted to help as many people as possible, we needed the best partners. In 2009, we agreed that Memorial Sloan Kettering Cancer Center would take over the ownership of Cycle for Survival and Equinox officially became the Founding Partner. Flash forward to today, and Cycle for Survival has raised more than $220 million! I'm proud that 100% of every donation, yes every penny, goes directly into life-saving rare cancer research within six months of the annual indoor cycling events, which now take place in 17 cities nationwide.
While Cycle for Survival's trajectory was heading straight up, Jen's health struggle was devastatingly swinging up and down. With her incredible spirit and tenacity, Jen would beat the cancer through chemo and surgery, but then it would frustratingly come back again and again. After going into remission six times, it returned with such a vengeance in 2011 that even the world's leading doctors were forced to say, "I'm sorry, there's nothing more we can do."
Those were the most difficult words I've ever heard, by far. I hope no other family has to hear these crushing words.
When Jen died soon after, I didn't know what would happen to me, to my life, and to Cycle for Survival. I do remember making two very important choices at the time. First, I chose to get out of bed and put one foot in front of the other. It wasn't easy. Tears, pain, and grief would hit at any hour of the day or night. I did have a great support network of family and friends who kept me moving forward. One friend in particular changed the route of her morning runs so that I would join her and start getting back to exercising.
My second key choice was to stay involved with Cycle for Survival. At times, it was an excruciatingly difficult decision because I felt the depth of my loss each and every time I stepped into one of the events. However, it was also rewarding and energizing because I could see firsthand how many people it was helping, even though it was too late for Jen.
I began to travel across the country with the Cycle for Survival staff. My hope was to spread the word about rare cancers; along the way I met a lot of wonderful people who shared their stories with me. What I soon realized is that each of us faces obstacles in our lives. For me, it was losing the person who I wanted to spend my life with. For others, it might be challenges with their kids or in their professional lives. The common theme is that we don't have control over the fact that we have to face these challenges. But the biggest lesson I've learned is that we very much do have a choice in how we react.
I made the choice to do everything I can to help rare cancer patients and their families and it has been transformative and healing for me. The small group who rode in the first Cycle for Survival event has grown into a powerful movement of nearly 40,000 riders making a real difference. If Jen were diagnosed today, there are new treatments available– including genomic sequencing, targeted therapies, and immunotherapies – that could help her. Those weren't even options a short time ago. That's the result of funding research.
A recent Cycle for Survival event shows the passion and power of the community.
(Courtesy David Linn)
I also want to share one more choice I made. Remember that friend who changed the route of her morning runs so I could start exercising after Jen died? Well, over the years friendship grew into love, and we're now building a home together and can't wait to see what the future holds for us.
So with all that in mind I ask – when you face those inevitable challenges in your life, how will you choose to react? Remember that even in the midst of hopelessness, you can find choices. Those will be the decisions that define and guide you.
Friday Five: These boots were made for walking, even for people who can't
The Friday Five covers important stories in health and science research that you may have missed - usually over the previous week but, today, we're doing a lookback on breakthrough research over the month of October. There are plenty of controversies and troubling ethical issues in science – and we get into many of them in our online magazine – but this news roundup focuses on scientific creativity and progress to give you a therapeutic dose of inspiration headed into the weekend.
Listen on Apple | Listen on Spotify | Listen on Stitcher | Listen on Amazon | Listen on Google
This Friday Five episode covers the following studies published and announced over the past month:
- New boots could have you moving like Iron Man
- The problem with bedtime munching
- The perfect recipe for tiny brains
- The best sports for kids to avoid lifelong health risks
- Can virtual reality reduce pain?
Should egg and sperm donors reveal their identities? The debate pivots on genetics and medical history.
Until age 35, Cassandra Adams assumed her mother and father were her biological parents. Then she took saliva tests through two genealogy databases—23andMe and AncestryDNA—and discovered a discrepancy in her heritage. In bringing up the matter with her parents, she learned that fertility issues had led the couple to use a sperm donor.
“Most people my age were not told,” said Adams, now 40 and a stay-at-home mom in Jersey City, New Jersey, who is involved with donor-conception advocacy. “Even now, there’s still a lot of secrecy in the industry. There are still many parents who aren’t truthful or planning not to be truthful with their children.”
While some of those offspring may never know a significant part of their medical history, Adams is grateful that she does. Surprisingly, the DNA test revealed Jewish ancestry.
“There are a lot more genetic conditions that run in Jewish families, so it was really important that I get my medical history, because it’s very different from my dad who raised me,” said Adams, who has met her biological father and two of three known half-siblings. As a result of this experience, she converted to Judaism. “It has been a big journey,” she said.
In an era of advancing assisted reproduction technologies, genetics and medical history have become front and center of the debate as to whether or not egg and sperm donations should be anonymous – and whether secrecy is even possible in many cases.
Obstacles to staying anonymous
People looking to become parents can choose what’s called an “identity-release donor,” meaning their child can receive information about the donor when he or she turns 18. There’s no way to ensure that the donor will consent to a relationship at that time. Instead, if a relationship between the donor and child is a priority, parents may decide to use a known donor.
The majority of donors want to remain anonymous, said reproductive endocrinologist Robert Kiltz, founder and director of CNY Fertility in Syracuse, New York. “In general, egg and sperm donation is mostly anonymous, meaning the recipient doesn’t know the donor and the donor doesn’t know the recipient.”
Even if the donor isn’t disclosed, though, the mystery may become unraveled when a donor-conceived person undergoes direct-to-consumer genetic testing through ancestry databases, which are growing in number and popularity. These services offer DNA testing and links to relatives with identifiable information.
In the future, another obstacle to anonymity could be laws that prohibit anonymous sperm and egg donations, if they catch on. In June, Colorado became the first state in the nation to ban anonymous sperm and egg donations. The law, which takes effect in 2025, will give donor-conceived adults the legal authority to obtain their donor’s identity and medical history. It also requires banks that provide sperm and egg collection to keep current medical records and contact information for all donors. Meanwhile, it prohibits donations from those who won’t consent to identity disclosures.
“The tradition of anonymous sperm or egg donation has created a vast array of problems, most significantly that the people thus created want to know who their mommy and daddy are,” said Kenneth W. Goodman, professor and director of the Institute for Bioethics and Health Policy at the University of Miami Miller School of Medicine.
“There are counter arguments on both sides. But the current situation has led to great uncertainty and, in many cases, grief,” Goodman said.
Donors should bear some moral responsibility for their role in reproduction by allowing their identity to be disclosed to donor-conceived individuals when they turn 18, Goodman added, noting that “there are counter arguments on both sides. But the current situation has led to great uncertainty and, in many cases, grief.”
Adams, the Jersey City woman who learned she was Jewish, has channeled these feelings into several works of art and performances on stage at venues such as the Jersey City Theater Center. During these performances, she describes the trauma of “not knowing where we come from [or] who we look like.”
In the last five years, Kathleen “Casey” DiPaola, a lawyer in Albany, New York, who focuses her practice on adoption, assisted reproduction and surrogacy, has observed a big shift toward would-be parents looking to use known sperm donors. On the other hand, with egg donation, “I’m not seeing a whole lot of change,” she said. Compared to sperm donation, more medical screening is involved with egg donation, so donors are primarily found through fertility clinics and egg donor agencies that prefer anonymity. This leads to fewer options for prospective parents seeking an egg donor with disclosed identity, DiPaola said.
Some donors want to keep in touch
Rachel Lemmons, 32, who lives in Denver, grew interested in becoming an egg donor when, as a graduate student in environmental sciences, she saw an online advertisement. “It seemed like a good way to help pay off my student loan debt,” said Lemmons, who is married and has a daughter who will turn 2-years-old in December. She didn’t end up donating until many years later, after she’d paid off the debt. “The primary motivation at that point wasn’t financial,” she said. “Instead, it felt like a really wonderful way to help someone else have a family in a few weeks’ time.”
Lemmons originally donated anonymously because she didn’t know open donations existed. She was content with that until she became aware of donor-conceived individuals’ struggles. “It concerned me that I could potentially be contributing to this,” she said, adding that the egg donor and surrogacy agency and fertility clinic wouldn’t allow her to disclose her identity retroactively.
Since then, she has donated as an open donor, and kept in touch with the recipients through email and video calls. Knowing that they were finally able to have children is “incredibly rewarding,” Lemmons said.
When to tell the kids
Stanton Honig, professor of urology and division chief of sexual and reproductive medicine at Yale School of Medicine, said for years his team has recommended that couples using donor sperm inform children about the role of the donor and their identity. “Honesty is always the best policy, and it is likely that when they become of age, they might or will be able to find out about their biological sperm donor,” he said. “Hiding it creates more of a complicated situation for children in the long run.”
Amy Jones, a 45-year-old resident of Syracuse, N.Y., has three children, including twins, who know they were conceived with anonymous donor eggs from the same individual, so they share the same genetics. Jones, who is a registered nurse and asked for her real name not to be published, told them around age seven.
“The thought of using a known donor brought more concerns—what if she wanted my babies after they were born, or how would I feel if she treated them as her own every time I saw her?” said Jones.
“I did a lot of reading, and all psychologists said that it is best to start the conversation early,” she recalled. “They understood very little of what I was telling them, but through the years, I have brought it up in discussion and encouraged them to ask questions. To this day, they don't seem to be all that interested, but I expect that later on in life they may have more questions.”
Jones and her husband opted to use a donor because premature ovarian failure at age 27 had rendered her infertile. “The decision to use an egg donor was hard enough,” she said. “The thought of using a known donor brought more concerns—what if she wanted my babies after they were born, or how would I feel if she treated them as her own every time I saw her?”
Susan C. Klock, a clinical psychologist in the section of fertility and reproductive medicine at Northwestern University Feinberg School of Medicine, said, “Anonymity is virtually impossible in the age of direct-to-consumer genetic testing.” In addition, “selecting an identity-release donor is typically not the first thing parents are looking at when they select a donor. First and foremost, they are looking for a donor with a healthy medical background. Then they may consider donor characteristics that resemble the parents.”
The donor’s medical history can be critical
Donor agencies rely on the self-reported medical history of egg and sperm donors, which can lead to gaps in learning important information. Knowing a donor’s medical history may have led some families to make different or more well-informed choices.
After Steven Gunner, a donor-conceived adult, suffered from schizophrenia and died of a drug overdose at age 27 in 2020, his parents, who live in New York, learned of a potential genetic link to his mental illness. A website, Donor Sibling Registry, revealed that the sperm donor the couple had used, a college student at the time of donation, had been hospitalized during childhood for schizophrenia and died of a drug overdose at age 46. Gunner’s story inspired Steven’s Law, a bill that was introduced in Congress in July. If passed, it would mandate sperm banks to collect information on donors’ medical conditions, and donors would have to disclose medical information the banks weren’t able to find.
With limited exceptions, the U.S. Food and Drug Administration requires donors to be screened and tested for relevant communicable disease agents and diseases such as HIV, hepatitis viruses B and C, the Zika virus and several STDs. With current technology, it is also impossible to screen for thousands of rare genetic diseases. “If a couple is using IVF (in vitro fertilization) to conceive with the donor gamete, some may opt for pre-implantation genetic testing to assess for chromosomal abnormalities,” Klock said.
Even these precautions wouldn't cover every disease, and some would-be parents don't get the genetic screening. In a situation where one donor has a large number of offspring, it is concerning that he or she can spread a rare disease to multiple people, said Nick Isel, 37, of Yorkville, Illinois, who was conceived with donor sperm due to his parents’ fertility issues. They told him the truth when he was a teenager, and he found his biological father with a journalist’s help.
Since 2016, Isel, who owns a roofing company, has been petitioning the FDA to extend the retention of medical records, requiring the fertility establishment to maintain information on sperm and egg donors for 50 years instead of the current 10-year mandate.
“The lack of family health information,” he said, “is an ongoing, slow-motion public health crisis since donor conception began being regulated by the FDA as a practice.”