Updates from Joe

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.

Cheers to Seven Years of Remission

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Joseph indoors, holding a cocktail, and with a lit Christmas tree behind him.
This year, the COVID-19 pandemic makes it especially important to celebrate good health.

MY REMISSION ANNIVERSARY IS A WEEK BEFORE CHRISTMAS. On December 20, 2013, I received my first PET scan after finishing six rounds of R-EPOCH chemotherapy, and the results were normal. It was the gift I was hoping for and was ecstatic to receive. The chemo worked, and my large B cell non-Hodgkin lymphoma was in remission, where it has remained ever since.

During this crisis, people battling cancer face the terrifying reality of getting treatment at hospitals filled with COVID patients. Paradoxically, to get better, they need to be where the risk of getting the virus is very high, while their immunity is deficient.

2020 is also the seventh year that I’m raising money for the Leukemia and Lymphoma Society (LLS) through their Light The Night event. LLS has resources for patients, families, and caregivers during this unprecedented challenge.

Thank you to everyone who has given this year and in the past. If you haven’t donated and want to, time is running out! There are only two days left to help before the cutoff on December 31! Please visit my fundraising page to make your gift. 

I wish you and yours a happy and healthy 2021 and thank you as always for your support. 

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

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. ❤️

Four Years Later

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Joseph Caserto Portrait

My new business portrait, taken in April, by Mikiodo.

Exactly four years ago, on the afternoon of July 10, 2013, my lymphoma adventures began. A chest x-ray would show that allergies weren’t causing my swollen face, but instead that I had a mass behind my heart, pressing on a nerve that runs to the face, causing the swelling. This was the scenario that my doctor wanted to rule out. She would call a few hours later to say, “This is not what I expected to find,” send me for a CT scan the next day, and the day after that, call again with the news that I had lymphoma. Four years, eighteen weeks of chemo, and several scans later, I’m back to working full time, am six months away from being considered cured, and continuing to tackle life’s adventures, one day at a time.

First and last CT Scans.

Before and After: My first CT scan, next to my last one.

My last scan in January of this year, was in fact my last scan. The contrast between the before and after images shocked me when I saw them side by side. This time, the view was a crosswise section of my chest, looking down toward my feet, rather than the front to back ones I had seen in the past. If I remember correctly, those figure-eight shapes are my bronchi, the main passageways to the lungs, being squashed by the mass in the first image, and then seen normally in the second one.

The challenges I’ve faced over these last 48 months have been transformative, and given me a stronger awareness of myself. Much of that has come from sharing my story. From the beginning, I thought that if I can help someone going through this, it would be a reason to have gone through it, myself. It turned out that journaling my experiences has been an important component of my treatment and recovery.

Summer 2017 Cover of ADDitude magazine.A year ago, my oncologist cleared me to return to work full time, with no restrictions. At almost exactly the same time, I was connected to what would become a great new client, and a nice piece of new business as Consulting Creative Director of ADDitude magazine, a quarterly publication for people and families with ADHD and LD.

Now that I see the light at the end of the tunnel, I’m on to some new adventures. I’m frequently in the Mid-Hudson Valley, where I spend my time working on the house that my Parents built and I grew up in, and which my brother and I inherited after our Mom passed in 2014. I use it as a second home, and a retreat from the hustle, bustle, and heat of NYC. After 20 summers in an apartment on the top floor of a walkup, it’s nice to be able to enjoy some open space and fresh air. I’m also officially coming out as a gay man. Although I’m not a fan of labels, that’s the one that most people understand, so we’ll go with it for explanatory purposes. Having cancer helped me find the courage to seek out what makes me happy, and to live my life with that as my goal. It’s simply too short not too.

Thanks to everyone who has helped me get here over these past four years. As the saying goes, whatever doesn’t kill you makes you stronger, and I’m living proof of that.

The Halfway Mark

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2-year_toast

Selfie toast that I texted to my friend Andrew on the evening that I got  my scan results. He was celebrating six months of remission.

It has been a while since I’ve posted an update, and no news is indeed good news. In fact, it is very good news, which many relatives and friends already know. I had a CAT scan last December, just before Christmas, and the results came back excellent. This means that I have officially been in remission for two years, which is an important milestone.

It marks the halfway point to being cured, and reduces the chances of a recurrence to only 1-2%. In fact, it will be my last scan, because the risk of exposure to radiation for the test is higher than the risk of not getting scanned.

I’ll continue to go for follow up labs and exams for another two years, and my Christmas gift for 2017 will be that I will officially be considered cured!

Thanks to everyone for their ongoing love and support through this adventure over the last two and a half years. It has given me the strength and courage to keep moving forward.

As always, lots o’ love!

Joseph/Joe