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.
Twice a day, morning and night, I use a neti pot to send a warm saltwater solution coursing through one nostril and out the other to flush out debris and pathogens. I started many years ago because of sinus congestion and infections and it has greatly reduced those problems. Along with vaccination when it became available, it seems to have helped with protecting me from developing Covid-19 symptoms despite being of an age and weight that puts me squarely at risk.
Now that supposition of protection has been backed up with evidence from a solidly designed randomized clinical trial. It found that irrigating your sinuses twice a day with a simple saltwater solution can lead to an 8.5-fold reduction in hospitalization from Covid-19. The study is another example of recent research that points to easy and inexpensive ways to help protect yourself and help control the epidemic.
Amy Baxter, the physician researcher behind the study at Augusta University, Medical College of Georgia, began the study in 2020, before a vaccine or monoclonal antibodies became available to counter the virus. She wanted to be able to offer another line of defense for people with limited access to healthcare.
The nasal cavity is the front door that the SARS-CoV-2 virus typically uses to enter the body, latching on to the ACE2 receptors on cells lining those tissue compartments to establish infection. Once the virus replicates here, infection spreads into the lungs and often other parts of the body, including the brain and gut. Some studies have shown that a mouthwash could reduce the viral load, but any effect on disease progression was less clear. Baxter reasoned that reducing the amount of virus in the nose might give the immune system a better chance to react and control that growth before it got out of hand.
She decided to test this approach in patients who had just tested positive for Covid-19, were over 55 years of age, and often had other risk factors for developing serious symptoms. It was the quickest and easiest way to get results. A traditional prevention study would have required many more volunteers, taken a longer period of follow up, and cost money she did not have.
The trial enrolled 79 participants within 24 hours of testing positive for Covid-19, and they agreed to follow the regimen of twice daily nasal irrigation. They were followed for 28 days. One patient was hospitalized; a 1.27% rate compared with 11% in a national sample control group of similar age people who tested positive for Covid-19. Patients who strictly adhered to nasal irrigation had fewer, shorter and less severe symptoms than people in the study who missed some of their saline rinses.
Baxter initially made the results of her clinical trial available as a preprint in the summer of 2021 and was dismayed when many of the comments were from anti-vaxxers who argued this was a reason why you did not need to get vaccinated. That was not her intent.
There are several mechanisms that explain why warm saltwater is so effective. First and most obvious is the physical force of the water that sweeps away debris just as a rainstorm sends trash into a street gutter and down a storm drain. It also lubricates the cilia, small hair-like structures whose job it is to move detritus away from cells for expulsion. Cilia are rich in ACE2 receptors and keeping them moving makes it harder for the virus to latch on to the receptors.
It turns out the saline has a direct effect on the virus itself. SARS-CoV-2 becomes activated when an enzyme called furin snips off part of its molecular structure, which allows the virus to grab on to the ACE2 receptor, but saline inhibits this process. Once inside a cell the virus replicates best in a low salt environment, but nasal cells absorb salt from the irrigation, which further slows viral replication, says Baxter.
Finally, “salt improves the jellification of liquid, it makes better and stickier mucus so that you can get those virus out,” she explains, lamenting, “Nobody cares about snot. I do now.”
She initially made the results of her clinical trial available as a preprint in the summer of 2021 and was dismayed when many of the comments were from anti-vaxxers who argued this was a reason why you did not need to get vaccinated. That was not her intent. Two journals rejected the paper, and Baxter believes getting caught up in the polarizing politics of Covid-19 was an important part of the reason why. She says that editors “didn't want to be associated with something that was being used by anti-vaxxers.” She strongly supports vaccination but realizes that additional and alternative approaches also are needed.
Premeasured packets of saline are inexpensive and can be purchased at any drug store. They are safe to use several times a day. Say you’re vaccinated but were in a situation where you fear you might have been exposed to SARS-CoV-2; an extra irrigation will clear out your sinuses and may reduce the risk of that possible exposure.
Baxter plans no further study in this area. She is returning to her primary research focus, which is pain control and reducing opioid use, but she hopes that others will expand on what she had done.
Podcast: The Friday Five Weekly Roundup in Health Research
The Friday Five covers five stories in research that you may have missed this week. 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.
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Here are the promising studies covered in this week's Friday Five:
- A pill to prevent lung cancer?
- Ancient wisdom about Neti pots could pay off for Covid
- Breakthrough for precision medicine and obesity
- How to refreeze the north and south poles
- The connection between taking multivitamin pills and brain health