You might think it's really hard to cycle over 500 miles from New York City to Niagara Falls, but it's actually not.
Really hard is finding out that you or someone you care about has cancer. Really hard is making decisions about treatment. Really hard is dealing with the side effects of chemo, radiation, infusions, and surgery. Really hard is seeing the physical and emotional toll cancer takes on both the patient and their loved ones. Impossibly hard is saying good-bye to someone taken too soon by cancer.
But through all that pain hope can be found. Hope comes from revolutionary new treatments that improve quality of life and outcomes for cancer patients. Hope comes from medications that maybe can even prevent or cure cancer. But those kinds of revolutions can only happen through high-level research, and that research is in constant need of funding.
My Personal Blog
On the tolling of bells
I got to witness a very beautiful moment a couple of weeks ago. It was poignant, hopeful, and heartbreaking, all at the same time.
See, a close family member of ours has recurrent "Platinum-resistant" stage IV ovarian cancer, which means that the first-line chemo treatment is not considered effective. So, three out of every four Fridays of the month, I take her to the infusion center to receive other types of chemotherapy. I sit with her, make sure she has what she needs, and we talk about life, my kids, music and art, politics, the past, and whatever form the future may take. A typical Friday lasts about 4-5 hours. This will continue until the current treatment is no longer effective either, and then we hope there are trials for which she will qualify or some experimental treatment that will hopefully prolong her life with some quality and dignity. Until we have to confront that day, we just carry on with our weekly routine together.
On the Friday before Thanksgiving, I had stepped out for a few moments to bring back some coffee. As I stepped back into the center, I saw an older woman being walked to "The Bell". If you're unfamiliar with the practice, chemo wards traditionally have a brass bell with a poem inscribed on a plaque that reads, "Ring this bell/ Three times well/ Its toll to clearly say/ My treatment's done/ The course is run/ And I am on my way." This is followed by the patient ringing the bell. I stopped to watch this woman, who didn't speak much English, read it out as best she could, while coached by her family. They then instructed her to ring the bell, which she did way more than three times, with great gusto and joy over being done and the prospect of regaining her prior life. It brought tears to my eyes for a litany of reasons. At that moment, I rued having to miss my wife ringing the bell in September 2020 because no visitors were allowed due to Covid. Then I thought about the people who never get to ring that bell, the ones who just keep getting treatment until it stops working, or their bodies can't tolerate the side effects anymore, like the person I was there with. What about them?
There are cancers that are classified as rare or uncommon because they affect a smaller percentage of the population than the common ones (common cancers include skin, lung, breast, prostate, and colon cancers). Some uncommon or rare cancers are things like ovarian and pancreatic cancer, even though we very well might know of, or know directly, someone who has been diagnosed with one of these diseases. They are insidious and hard to treat, particularly because, unlike the common forms listed above, they are difficult to screen for, and they don't usually become symptomatic until they reach late stage. By the time diagnosis is made the disease is metastatic.
When we talk about research to "end" cancer, we have to look at it through a multi-focal lens. At one end of the focal length is prevention, finding ways to keep the disease from growing in the body in the first place. At the other end is "curing" the disease in people diagnosed, no matter how aggressive or advanced the cancer might be. Both are extremely difficult to do, although progress is being made on both sides. In between is the bread and butter: early detection and effective interventional treatment. We need to get to a point where a test or scan can detect cancer in its earliest molecular stages, and we need to have targeted therapies that can neutralize those rogue cells before they do any damage, without the treatment harming the patient to the extent that current therapies do.
This is why the research is so important. The pipeline starts at the graduate labs, then to pharma and med-tech R&D, which feed into all phases of clinical trials, leading to better outcomes for patients. The costs of funding this research is astronomical, but the cost of not funding the research is so much higher. There can one day be a better way forward for my family member and every other diagnosed with these kinds of cancers. If we make sure it can happen. Someone from the future will thank us for it.
by Harry Marenstein on Sat, Dec 02, 2023 @ 8:13 PM
Me Me ME!
I am so deeply grateful to the two dozen or so people who have stepped up in just the first 10 days of my ESR fundraising campaign. Due to a technical mishap, my total raised is overstated by quite a bit and it will be corrected, but I've still managed to raise around $3,000 in that short time. Another $500 and I'll have hit my minimum and be cleared to ride in July 2024.
Having completed this event in 2022, I know what's in store for me, and I therefore know what it takes for me to deal with it in relative comfort: fitness. At the end of ESR 2022, at 47 years old I was in the best shape I had ever been in as an adult. Encouraged by this, I continued riding throughout August and September, trying to take on challenges when I could, including climbing to the top of Bear Mountain in Rockland County, NY. Summer seemed to extend into mid-October, but in the blink of an eye, El Nino arrived and brought with it lots of cold and rain. Usually, my retreat would be to the indoor trainer and the virtual cycling platform, Zwift, which I'd using since mid-2020. But this time, things were different. Life got complicated. There were medical crises in our immediate family that shifted our focus to getting through the days. The trainer never came out of the closet, and I just stopped doing anything. I kept telling myself that tomorrow would be a day I could get going. Tomorrow turned into next week, which turned into next month. Before I knew it, 8 months had gone by. Between no physical activity and my bad habit of stress eating, I had gained 18 pounds and lost all my fitness. It was very depressing.
I did finally get back on the bike in May, but it was difficult to get any consistency back, and fitness takes time. My jumpstart finally came when I did 24 hours of volunteering at ESR 2023. Seeing my friends, watching them ride, and cheering them on not only made me lament not going all the way to the Falls with them, made me determined to ride again. In August, I started controlling how much I ate and started a six-day a week exercise regimen. Slowly, but surely, the pounds are shedding I'm now 2/3 of the way towards my prior weight and the strength is coming back, too. These will get me to a base line of fitness necessary for the more challe