lymphoma

Ten.

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Celebrating a decade of fighting cancer and the transformation it started.

Selfie of the author
Milestone Selfie

Today marks ten years since large B cell non-Hodgkin lymphoma forever changed my life.

On the afternoon of Wednesday, July 10, 2013, a chest X-ray revealed that I had a mass behind my heart, and all Hell broke loose. By Friday, I would have a diagnosis. The surgical biopsy I would have the week after would reveal that the mass was the size of a grapefruit. Three weeks later, I would finish my first of six five-day rounds of chemo.

I started this blog to update my friends and loved ones on my journey, and it developed into a part of my treatment and recovery. It was a form of catharsis for me and a means of support for others. I wanted this space to counter the plethora of negative, poor, and downright wrong information.

My July 2013 Calendar shows my scheduled regimen of appointments, medications, and temp checks.

Most importantly for myself, it became a creative release that kept my hands and mind moving. That’s something I’ve since learned is critical for me to keep anxiety at bay so I can keep going.

Four years after, six years ago today, I used this space that I created to help me cope with my diagnosis to come out publicly. I had been living an out life for a while in NYC and became tired of wondering, does this person know? How will they react? So, I decided to end that and move forward. Here’s the opening of a letter I wrote a few weeks ago for my Town Democratic Committee newsletter to celebrate Pride Month:

If you told teenage me that I’d be back living in Milton, in the house my parents had built and where I was raised, flying a rainbow flag next to the garage, presenting the Town Board with a Pride flag last June in place of my friend Tim Lawton who donated it and had an emergency, calling out [a] notorious hater in the [local weekly newspaper] for the second consecutive year, ending up on the front page of that publication after being in the inside front cover the year before, and being quoted in the related articles, I wouldn’t have believed it. But, here we are.

Cancer isn’t something you ever get over. It’s not the flu. Someone once said it’s like a monster under the bed that you always think might attack. My chances of a recurrence of this type of lymphoma are practically zero. But, when I got lab results a few months ago showing a low white cell count, of course, my mind went to the monster under the bed. Even though I logically knew it was likely nothing, which it ended up being, it was a relief when the results of the repeated labs two weeks later came back normal.

On December 20, I’ll celebrate ten years in remission. In October, I’ll participate in my eleventh Light The Night event to raise money for the Leukemia and Lymphoma Society. The generous donations of all who have given over the years have helped my team and me raise over $25,000 since 2013!

This evening, I raised a glass to ten years of battling large B cell non-Hodgkin lymphoma and the transformations that continue to come from it. Thank you for following and supporting me on this adventure. Cheers to the years ahead!

Nine Years in Remission!

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In December, I celebrated nine years in remission from large B cell non-Hodgkin’s lymphoma. Thanks to my generous donors, my Light The Night team and I have raised over $25,000 to help the Leukemia and Lymphoma Society help fight blood cancer and save the lives of people like me. For more, visit https://pages.lls.org/ltn/nyc/manhattn22/JCaserto.

Seven Years Later

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Obligatory milestone selfie, 2020 edition

I’VE COMPLETED ANOTHER TRIP AROUND THE SUN since my diagnosis in 2013 of large B-cell non-Hodgkin lymphoma. And what a trip it has been. 

Along with everyone in NYC, I scrambled in early March as the Corona Virus started to spread exponentially. I kept remembering the saying, “This, too, shall pass.” Early in my treatment, I walked by a local restaurant and saw it written on the sidewalk chalkboard. It was an affirmation of hope and boosted my resilience.

I used the phrase and shared that I was a cancer survivor during my first Zoom session of the course I teach at Pace University to reassure my students. The class transitioned to remote learning in days, and many of my understandably anxious pupils had to pack up and leave campus. It must have felt like they were living in a sci-fi thriller. One had to find a flight home to Europe where the virus had already hit, and Italy was in lockdown. Another, from India, had no choice but to stay in the city. Others went to their homes within New York City and the metropolitan area where transmission rates were alarming.

I often reflected on counting off each of the 18 weeks of chemo and beyond. July became August, summer became autumn, and the holiday season approached. After chemo, the time between follow up scans and visits increased, and at my annual checkup last December, Dr. Raphael, my oncologist, told me that I didn’t need to come back anymore. 

I wondered, too, what it must be like for all the cancer patients during the pandemic. I had to go to NYU Langone daily for five straight days of infusions, and, again, the day after finishing for an injection of Neulasta, a drug to boost my blood cell production because the chemo wiped out my immune system. That was challenging enough in normal times, much less during the chaos of a highly contagious virus, with patients lining the hospital’s hallways, where many would take their last breaths. 

When I learned that the Leukemia and Lymphoma Society developed a fund to help blood cancer patients impacted by COVID, and I kicked off my Light The Night fundraising early. Thanks to the generosity of so many, I have already raised over $2600. Please visit my page to learn more and donate online.

Yes, cancer did indeed pass, and COVID will, too. Meanwhile, we have the opportunity to learn what is important to us, how the human spirit can get us through challenging times, and how to savor life. Most importantly, it’s also ok and necessary to feel joy, despite it all, which is what surviving cancer has taught me.

Six Years Later

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I honestly forgot that today marks six years since I was diagnosed with large B cell non-Hodgkin lymphoma until this Facebook memory popped up on my feed:

Facebook post from July 13, 2013: Huge thanks to the jackass at Jay St., who ran into me and knocked my coffee out of my hand, because he was trying to get on the C Train—obviously the last one to Heaven—before the doors closed. Joke's on him: I left the car he got on because there was no AC and someone lying on the seats, asleep.

Losing my coffee would turn out to be the least of my worries on this day in 2013. That afternoon, Dr. Huang, my then primary care doctor, would send me for a chest x-ray to rule out that something in my chest was causing my face to swell, and within an hour, I would know that I had a large mass behind my heart. The next day I would go for a CT scan, and the day after that, she would call me with the news that I had lymphoma.

It’s not that I completely forgot about today’s anniversary. My brain was full of work and life, and ironically, on my way to the subway with a stop for coffee, I was feeling anxious. I realized that this hot July morning reminded me of that uncertain early period when I would go back and forth to the hospital for testing, and then move onto the first weeks of chemo. I would eventually reach the end of chemo, enter remission, and annually celebrate those milestones along with being diagnosed.

These moments are an important part of the healing process. They remind me to stop, reflect on where I was, and celebrate how far I’ve come. As a cancer survivor, there’s always the worry of “the monster under the bed.” I wonder if a symptom that I might be experiencing could be something more serious. Will I have to go through another cancer diagnosis? Can I handle that? Will it be worse this time? Maybe not as treatable? And, then I tell myself to take it a step at a time. To just breathe. To bask in the relief when everything turns out fine. And to celebrate life, even when it’s challenging, frustrating, and exhausting.

On this day 2017, I would use this blog, which I originally created to share progress updates with family and friends, to publicly come out on the fourth anniversary of my diagnosis. I realized that I had created the perfect forum to do so.

Thank you to everyone who has supported me on these adventures. Cheers to today, and all the days of the years ahead.

selfie of Joe taken on July 10, 2019, the sixth year anniversary of his diagnosis
Obligatory 6-Year Diagnosis Anniversary Selfie

Light The Night 2018

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I’ve set the goal of raising $1000 this month for the Leukemia and Lymphoma Society (LLS) via Light The Night, To celebrate my five year anniversary of being diagnosed with large B cell non-Hodgkin lymphoma. Thanks to the generosity of our family and friends, since 2013, my team has raised over $17,000 to help fight blood cancer. In fact, Rituxin® (Rituximab), one of the life-saving chemo drugs that I received, was made possible through the help of LLS. Please click here to visit my fundraising page and give if you can to help me Light The Night. When we walk, cancer runs.

Five Years Later

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5-Year Selfie in Times Square on the Q Train

My lymphoma adventure began five years ago, on July 10, 2013, when what I thought would be a routine doctor appointment lead to a chest x-ray, CT scan, and a diagnosis of large B cell non-Hodgkin lymphoma. Since I don’t have much news, I’ll share a few random thoughts.

A year ago, today, I posted my progress, and officially came out publicly. I had pretty much been living as out, and wanted to put any question on that front behind me, so I could live the life I want. The support from my family and friends has been wonderful and means a lot.

I started this blog with the goal of helping others by sharing my story. As I continue on my road to recovery, several friends have reached out with news of their own diagnoses, and questions about my experience with treatment. I’m glad that I was able to support them in some small way by sharing my story, and send love and healing to them and their loved ones.

I continue to do well, and will celebrate five years of remission in January. Meanwhile, I’m looking forward to a summer of traveling, friends, and working on my house.

Thank you all for your continued support. ❤️

Hear Me Tell My Story

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The question I’ve been asked and answered most is, “how did you find out you had lymphoma?”  The Leukemia and Lymphoma Society invited me to share my story with a group, as a prepared speech, this summer. I was honored to be the keynote speaker at their Light The Night Manhattan 2016 kickoff event, held for the Barclays team in New York City, on July 14, 2016. It was an emotional and cathartic experience, which I hope helped to inspire the team. While it isn’t the live version, you can hear my lymphoma adventure by clicking here. 

If you can, please donate to my Light The Night fundraising efforts and help me fight blood cancer.  

Help Me Change Cancer This Month

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Today is August 1. By the end of this month, you can help me change the future of blood cancer. I’m kicking off my 2016 Light The Night fundraising with a simple idea: Put aside your spare change for a month, count it up, and donate the amount you saved. (Click the image above to watch the video I made and learn more.)

Light The Night Team 2015

Rain didn’t keep Joe’s Adventurers away from Light The Night 2015.

Last year, thanks to the generosity of friends and family like you, my Light The Night team raised $4,185 for the Leukemia and Lymphoma Society to help fight blood cancer. This year, with your help, we can beat that goal. Your spare pocket change can get us further toward the ultimate win: a world without blood cancer.

Light The Night Videos, Starring: Me!

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Me, walking in Light The Night, Manhattan, last September.

Me, walking in Light The Night, Manhattan, last September.

 

My teammate, Sue, and I walking Light The Night, in Manhattan, September, 2013.

With my teammate, Sue, walking Light The Night, in Manhattan, September, 2013.

 

LAST FALL, I PARTICIPATED IN THE 2013 LIGHT THE NIGHT WALK, IN MANHATTAN. Thanks to the generosity of so many of you, my team raised a grand total of $5,482 for therapies and treatment advances for blood cancer patients! Because I was in treatment at the time, The Leukemia & Lymphoma Society, which sponsors the event, asked if I would participate in promo videos for the 2014 walk, as a representative of patients and survivors. There are two other videos that I don’t appear in: One for supporters, and the other for memorials. I had some reservations about being in the spotlight, but decided to give it a try. It turned out that helping to promote Light The Night by participating in these promo videos was a great experience.

My view of the film crew, as they interview me in my living room.

My view of the film crew, in my living room.

Although the finished videos are short, they’re edited from several hours of footage that the crew from Flicker Flacker Films shot. On the night of the event, they followed my teammate, Sue, and I, as we walked along the Hudson River on a beautiful September evening. A few weeks later, they came to my apartment to interview me and shoot some more. We had a lot of fun, and instead of wrapping up around lunchtime, we ended up continuing through most of the day.

One of the best, and most unexpected things to come out of the shoot, was the video I created, myself, as I went through the first day of my fifth round of chemo. Originally, Trish, the producer, wanted to shoot the footage herself, but because of patient privacy concerns, a crew making a video at the hospital wasn’t possible. For Plan B, she suggested I do a vlog (video blog) entry, which I wasn’t sure about at first, but then agreed to with the understanding that if I wasn’t happy with the results of my labor, we wouldn’t use it. Creating my own video turned out to be a very fun and enlightening project, which allowed me to use my creativity in a new medium.

The finished videos capture the spirit of the walk nicely, and I hope that they help raise awareness for LLS, as well as boost participation and donations. Sue and I will be participating again this year, on Thursday, September 18. Our team name is, Joe’s Adventurers, which comes from the title of this blog. Please check out my fundraising page for more information, and to donate or join us. As always, thanks to everyone for your support!

Lotsa Love,

Joe/Joseph

 

One Year Later

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Joseph Caserto July 10, 2013 Huge thanks to the jackass at Jay St., who ran into me and knocked my coffee out of my hand, because he was trying to get on the C Train—obviously the last one to Heaven—before the doors closed. Joke's on him: I left the car he got on because there was no AC and someone lying on the seats, asleep.

My Facebook Status, the morning the mass in my chest was found.

 

It turned out that losing my coffee on the morning of July 10, 2013, was the least of my problems that day. After lunch, I would go to my Primary Care Physician to have my swollen face checked out, have a chest X-ray to rule out the “unlikely” scenario that something in that area was causing the swelling, and learn that the unlikely was, in fact, definite: I had a large mass behind my heart, pressing on a facial nerve. Thus began my Lymphoma adventure, which would lead to this blog, and an experience that I can only describe as transformative. Three weeks later, I had had CT and PT Scans, a surgical biopsy, and five days of chemo that completed the first of six rounds. As the one-year anniversary of my diagnoses progresses, my recovery continues to go well, despite some struggles, and I have a different perspective on many things.

I’m in remission, and am on self-approved medical leave until my Oncologist clears me to return to part time work. Until then, I’m collecting longterm disability benefits from private insurance purchased through Freelancers Insurance Company. If you’re an independent worker, I highly recommend looking into disability coverage.

Even though I had an easy time with chemo, I started to think, ‘Wow, that was a bit intense.’ (I have a gift for understating things.)”

The biggest challenge I continue to face is my emotional health, which has been affected by my own cancer, as well as that of family members afflicted with the disease. Once out of the regimented routine of going for treatment, during what was a very cold, long, and dark winter, it began to hit me that I had been through a lot. Even though I had an easy time with chemo, I started to think, “Wow, that was a bit intense.” (I have a gift for understating things.) Having lost my grandmother to cancer in March, dealing with the effects of that grief on our extended family, and having my Mother continue to go through treatment, the already raw underlying emotions were magnified. Working with my team of excellent caregivers, I’m able to manage well using various methods: medication, psychotherapy and a support group, relaxation techniques, and nutrition. I have my moments, but I keep in mind that, “this, too, shall pass,” a mantra that a good friend shared with me at the very beginning of my diagnosis.

Because I have a flexible schedule, I’m able to spend time with family and friends, and have enjoyed extended visits to my Mom’s in the beautiful Mid-Hudson Valley of New York State. I spent a lot of time at the homestead last summer as I went through treatment, and it’s comforting to be in a place where I can continue to heal and be supported, as well as where I can help to heal and support.

Facing cancer has been like going through a mid-life crisis on steroids: There’s no sports car, but instead, in a short time, I have different priorities after having been confronted with my mortality. It’s easier to focus on taking care of myself, and not consider the needs of others before my own. I’m better at avoiding stress, which seems to permeate every aspect of life in New York City. I’m more comfortable asking for help, even if that’s as simple as telling a friend I need company, and inviting them to lunch or coffee.

My one-year anniversary of being cancer free (speaking confidently and optimistically) will be at the end of the year, when I will consider it among my holiday gifts. As always, the love and support of family and friends is something I feel every day, and rely on when I hit rough spots, or start to question my positivity. Thank you all for continuing to send prayers/thoughts/vibes/love or whatever words you use to describe those gifts of well wishes.

Lotsa Love,

Joe/Joseph