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.
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Big news - dollar for dollar match
Thanks to one of our big sponsors, who happen to be the incredible people who make all the moving parts (that aren't bicycle wheels) happen at ESR, I'm very excited to announce the following:
This Monday, May 6, starting at 12 p.m. EST, Port X Logistics is sponsoring a fundraising match of $25,000. Any gift made over $250 will be matched at $250.
This means that if you donate at noon on Monday, you will double the value of your donation, up to $250! This is a once a year event, and once Port X reaches the $25,000 threshold, the match is over. So, if you were thinking of donating, Monday at noon is the time to do it.
DOUBLE THE MONEY TO KICK CANCER'S ASS!!!
Peace,
Harry
by Harry Marenstein on Sun, May 05, 2024 @ 9:35 PM
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On the importance of research
A couple of weeks ago, I published the most personal blog entry I've ever written in either of my ESR fundraising bids. I thank everyone who reached out to me with words of support or who shared their own personal story.
While what our family experienced over that year was gut-wrenching, it ended up being manageable, thanks to my wife's screening mammogram showing her cancer at stage 2, and with good prospects for treatment. While things could have been worse, had she not gone as the world was shutting down, they could have been less bad had she not cancelled her previous scan for a work trip, and then delayed rescheduling. Those 8 months may have been the difference between just having radiation, vs. chemo and radiation. Those 8 months may have meant a lumpectomy instead of mastectomy. Those 8 months may have meant stage 1 instead of 2. There's no way to know, of course, but 8 months of delay is 8 months of tumor growth.
The moral of the story is, don't delay getting your routine screening. There are so many treatable and early detectable cancers. People put screening off because it's inconvenient, it's uncomfortable, sometimes it's embarrassing, and it's scary. Don't accept "I'd rather not know" from anyone, including yourselves. Stay aware of the changing guidelines for age and go as soon as you're supposed to. And most importantly, if you have a family history of some conditions, push your doctor to have you screened early. Got a mole that looks funny? Get it checked out. Not pooping right? Get it checked out. Breathing feels weird? Get it checked out. New guidelines for screening come out and you suddenly find yourself in the age group? Get checked out.
The Empire State Ride is all about funding research. We can all get behind that, so while we're at it, let's participate in some research ourselves, whenever possible. A few years back I signed up for a nationwide, decade-long study that's attempting to get a million participants to study long-term outcomes on health caused by disparities in access. As part of this study, participants give a blood sample. Over time, information becomes available based on genetic profiling. At first, it's pretty innocuous stuff, ranging from how likely you are to taste cilantro as soapy to the probable consistency of your earwax (yes, that turns out to be genetic). Later, it looks at your genome to tell you about your genetic/geographic origins. Again, no surprises for me. Most recently, information about genetic mutations that could cause health concerns were made available. Having found out about an important genetic marker, I'm now making sure to be monitored more closely for certain conditions, based on elevated risk factors. I only found this out because I opted to be informed. I had to option of saying "I don't want to know", but what good would that do me? I'd rather be inconvenienced by the extra screening than regret that I didn't do something as early as I could have. I want as much quality time as I can get.
So, say yes to research and no to ignorance.
And go get checked out.
This blog post is dedicated to Elizabeth Zumchak, who stayed on top of getting checked out. She went through a lot last year, but she has come out on the other side, stronger than ever. I look forward to seeing her and her husband, my childhood buddy Steve, when I ride into Utica on Day 4 of ESR.
- Peace
by Harry Marenstein on Sun, Mar 31, 2024 @ 6:56 PM
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My WHY
There are lots of good general reasons to ride the Empire State Ride or to participate in any number of charitable events. Who doesn't want to do something to help a cause like ending cancer?
Sometimes, though, there's a specific reason. A "why".
Four years ago, our lives changed forever.
Yes, I mean the pandemic, but it's so much more. As things were shutting down for what we thought would be a few weeks, another life-changing event was taking place in our family. I've never written about this, mostly because I'm really a very private person, but also because it was too raw to share. Time, however, has given me enough space to be able to put in in print.
The Covid-19 outbreak meant I got sent home in the middle of the day on a Tuesday in early March 2020. The next day, my wife had a mammogram scheduled. She was hesitant to go because of the impending situation, but I insisted. She was way overdue, having cancelled her annual appointment more than six months previously because of a work trip. "No telling when you'll even be able to get another appointment, given the situation", I said. So, she put on a mask and gloves and braved the subway into Manhattan for her scan.
Before long, there was another mammogram scheduled. They saw "something", probably a cyst, which run in the family. Then there was an ultrasound. By the first week of April, there was a biopsy, which immediately came back as positive for ductal carcinoma, one diffuse tumor, one in situ.
Four years and a month ago, the next step might have been straightforward. But these were no ordinary circumstances. Surgeries for all but the most dire of situations were cancelled and every available hospital space was being converted into a triage or critical care unit for the thousands of Covid-sickened patients that were deluging emergency rooms. We couldn't even get an in-person physical exam by an oncologist. All we could rely on were the pathology and genetic profile of her tumor and virtual consultations. There was much hemming and hawing about what approach to take, whether to have chemo or radiation, or both. As for when surgery could be scheduled, nobody could tell us anything. In a time of high anxiety, not having a clear path forward was the worst part of it.
It took another month, but because of the tumor type, second and third opinions, and the pandemic induced delays, neo-adjuvant chemotherapy was finally agreed upon. My wife endured 8 treatments over 16 weeks, followed by a mastectomy, and then 5 weeks of daily radiation therapy, before reconstructive surgery the following year. Side effects were hard, but not as bad as some. Recovery was challenging, but without the many of the complications that can accompany it. There is still daily discomfort, from the radiation scarring, from the implant, and from the meds. In general, though, she is one of the fortunate ones. This past fall, she was moved from "remission" to "survivor" status. This was something to celebrate. Yes, I still hold my breath while waiting for the results of every follow-up scan and appointment. I always will. But I now see a future for us. That wasn't always the case. There was a time - this time 4 years ago, in fact - where my mind kept taking me to a future without the most important person in my life, a future where my kids had only me to look after them. It was a nightmare that I couldn't wake up from. Seeing your best friend, your partner, confront a life-threatening illness, without being able to do anything to fix it, without knowing what the future holds, is a nightmare that too many people experience.
Ten percent of women diagnosed with breast cancer experience recurrence or metastasis. Over 40,000 women in the U.S. died from the disease in 2020. I am not a scientist. I am not a doctor. There have been moments over the last 4 years that I have felt helpless. But there are moments that I feel powerful. These moments are when I'm training for the Empire State Ride, when I'm on the road headed for Niagara Falls, knowing that the power of the millions of dollars we raise is going directly to changing the outcomes for everyone confronting cancer. This is my why.
by Harry Marenstein on Sun, Mar 10, 2024 @ 11:39 PM
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Overdue update
I've been slacking this time around.
Two years ago, I posted a new blog nearly every Sunday, but it's been hard to find the time and, I'll be honest here, the motivation. Don't get me wrong. I am motivated to ride, motivated to train, and motivated to raise as much as I can for cancer research. It's just that I like to post original content, rather than recycle material from the past. I've written it, you've read it (hopefully), so unless I've got something new to say, I've been keeping fairly quiet.
My weight loss has been going overall pretty well. As of two weeks ago, I was down 15lbs since last summer, leaving me just a few pounds shy of my riding weight. However, an extended weekend vacation with my wife, plus a little tweak to my back undid a few of those pounds. I didn't get on the bike for over a week, but I've been back working out daily since Thursday. Now I have to remember how to stop eating as though I'm still on vacation. I'm good at being disciplined until I'm not. Then I have a very hard time getting back on the horse. Plus, I'm a stress eater par excellence, and there's a lot of stress in our lives right now.
I've been meeting weekly with fellow ESR riders to do online training rides. It's been a great motivator. Everyone is so friendly and supportive, just as I remember them being in person throughout the week. Although Sunday is the one day of the week in which I don't have outside obligations to get me up early, it's worth sacrificing the little bit of extra sleep to get up and ride with them. We see each other's avatars on the screen, and we voice chat live over Discord. We each have our personal reasons for riding from New York to Niagara Falls, yet we are united in our efforts. Having someone to talk to during long and challenging training sessions definitely makes the time go by.
I don't want to leave you only with stories about me and cycling, though. We have to remember what this is about. My old college buddy and his family have been going through an extraordinarily tough time. His wife was diagnosed with stage 4 pancreatic cancer with lung metastasis last summer. It's a dire diagnosis, to say the least. She has undergone a brutal regimen of aggressive chemotherapy, which has shrunk her pancreatic tumor significantly, and prevented her lung tumor from progressing further. This is very encouraging for them, but they live with the reality that progression of the disease could recommence any time. As I wrote in my last post, pancreatic cancer is one of those hard to detect diseases until it's at a highly progressed stage. This means it's hard to treat and nearly impossible to cure right now. It's only a matter of time, given enough funding and the right research breakthroughs, before there are more means of early detection and even more treatment options.
To fund those, my friend is raising funds for the PanCan Purple Stride. I encourage you to help.
In the meantime, I will add Debbie Lifton to list of those I honor on my ride to Niagara Falls come July.
- Peace -
by Harry Marenstein on Sun, Mar 03, 2024 @ 10:53 PM
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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.
-Peace
by Harry Marenstein on Sat, Dec 02, 2023 @ 8:13 PM
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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 challenging work of training that begins shortly after the new year. I'm enjoying the discipline of getting at it every day, my clothes fit again, and I feel better. I'm looking forward to embracing the process.
July can't come soon enough.
by Harry Marenstein on Sun, Nov 12, 2023 @ 11:08 AM
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Back at it!
Back in 2022, I participated in my first ever Empire State Ride to End Cancer. I joined some 120 or so other cyclists as we pedaled over 500 miles from New York City to Niagara Falls. It was a beautiful way to see New York State and I found a crew of riding buddies and friends that I love dearly. More importantly, we raised over $1 million for Roswell Park Comprehensive Cancer Center in Buffalo.
After a year hiatus, I'm going back for the 10th anniversary edition of ESR, in July 2024. You might think it's difficult to pedal all that way, day after day, through whatever the elements bring, but it's comparatively easy when you consider things that actually are really hard.
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. That's where you and I come in.
In 2022, I ended up raising over $12,000, far exceeding my $5,000 goal. This time, I'm raising my goal modestly, but I hope to go well over it once again. Though my blog, I will share updates with you about my preparations as well as stories of the people the "why"s who motivate me to do this again. I will train my body and mind in preparation for long days in the saddle and short nights sleeping in tents along the way. I'll need your generous support both spiritual and financial to make it. As I did last time, I will add the names of people in whose honor or memory you make your donation to my Wall of Honor, with the hope that someday such a thing won't be necessary.
by Harry Marenstein on Wed, Nov 01, 2023 @ 10:53 PM
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