Ten.

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!

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.

Light The Night Videos, Starring: Me!

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

 

‘Tis the Season to Light The Night

Light the Night Walk

With my teammate, Sue, at the Finish Line.

In September, I took part in the Light The Night Walk to raise money for the Leukemia and Lymphoma Society. The funds we raised will provide cancer patients with lifesaving research, financial assistance, education, programs, advocacy, and personalized assistance. To date, my team has raised over $5,000, thanks to the generosity of family and friends. If you’re looking for a worthy cause to help in this season of giving, please contribute to my Light The Night fundraising efforts. Making your gift in someone’s name is a great idea for holiday present. Donations can be made through December 31, 2013, and are tax deductible on this year’s return as allowed. Thanks for helping me Light The Night, and have a very happy and safe holiday season!

Amazon Will Donate Part of Your Purchase to The Leukemia & Lymphoma Society

Amazon Smile. You shop. Amazon gives.

Saw this on Facebook and wanted to share:

Contribute to LLS when shopping on CyberMonday – and throughout the holiday season – with Amazon Smile! Visit http://smile.amazon.com/ search for The Leukemia & Lymphoma Society, “select” us as your organization and Amazon will donate 0.5% of your purchases to The Leukemia & Lymphoma Society! Happy holidays!

The Leukemia & Lymphoma Society held the Light The Night Walk that I did in September. My team has raised $5,432.00, so far, and donations can be made through the end of the month, so please consider us if you’re looking for a cause for your holiday giving. Donations are tax deductible as allowed by law.

Many Big Thanks for Helping Me Light The Night in NYC

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On a beautiful evening this past Wednesday, I took part in my first Light The Night Walk, with my teammate Sue and I raising over $5000 together for the Leukemia & Lymphoma Society!

Thanks to the generosity of our families and friends, we’ll help fund therapies and treatment advances for blood cancer patients. Whether you gave $5, $50, or $350, know that you’re saving the lives of people like me who have these diseases.

The walk kicked off at Pier 57, now renamed SuperPier. (On a side note, as a publication designer, I thought it was cool when I read in The New York Times that the name came from a 1952 Popular Mechanics article.)  It took awhile for everyone to get outside, but once we did, the walk along Hudson River Park was a very nice way to spend the evening. Sue and I were members of the Bright Lights Club, having raised over $1000 each. Everyone who raised over $100 was a Champion for Cures, and carried a balloon, which had a light inside it, in one of three colors: white for survivors and patients, red for supporters, and gold in memory of loved ones lost.

The event was very inspirational, and I’m proud that my team surpassed its fundraising goal. If you wanted to give, but didn’t, there’s still plenty of time. Donations will be accepted through the end of the year, and can be made online through my fundraising page, or if you’d prefer to give by check, please click here to email me for the address. In the meantime, I’m sending everyone a big hug of thanks for all your love, support, and generosity!

Countdown to Light The Night

Colorful balloons

Light The Night Walk is this Wednesday, and thanks to many generous donations, I’ve raised over $3100, so far! There’s still time to make a donation, or join Team Joe_C at SuperPier in NYC. I’ve set my team goal at $5000, and we’re only $1,100 away from reaching it. The money we’re raising will fund therapies and treatment advances for blood cancer patients. Your generosity will save lives.

Balloons are the symbol for light the night. Read how they also played a part in Live A Big Life Celebration Day, a powerful tribute to my friend Jerry’s late nephew, Cam.

Image: Graphicstock.com

The People We Meet

This French short beautifully captures how we can affect each other’s life, and the music is as charming as the illustration and animation. I love that it uses balloons as a symbol of friendship, love, and caring, which I realized is a nice connection to the Light The Night Walk, which also uses them. Just a reminder, I’m walking on Wednesday, September 25th, and you can help or join me.

If you can’t see the video here, just refresh your browser.

FLOATING IN MY MIND from GOBELINS pro on Vimeo.

 

Second Round Rundown

Joe in Cap and Black Tee

My friend, Carmen, snapped this pic of me, today.

I’m happy to report that I’m two for two! My second round of chemo went very well, with minimal side effects.

Dr. R. increased the dosage this cycle because I did so well after the first one, but I felt no differently for the most part, other than being slightly more tired. This gave me license to indulge in one of my favorite guilty pleasures: the afternoon nap.

I’m also happy to report that my reaction to the Neulasta shot was much less severe. This was expected, because I had less disease. This time, on a scale of one to ten, the pain in the bones of my lower back and legs only got up to a strong one at the most, and two Extra Strength Tylenols once a day took care of it. Last time, it topped off at a strong six, and I took the Tylenol every six hours. That time, the medication wore off at the height of the pain, after only about three and a half hours, leaving me to deal with it until I could take another dose. I also tried a preventative remedy that my Mom passed on—many of you know that she’s also an RN—which seems to have worked, and was recommended through an Oncologist in her medical community: one Claritin the evening before, of, and after the shot. I’m a good patient (if I do say so myself) so I first made sure to clear this with Moira, my fantastic RN/Hematology Nurse Practitioner, before taking anything that hadn’t been prescribed by their office.

The only real issue has been low white blood cell counts: 1500 total with 800 neutrophils (the NIH defines normal as 4,500 to 10,000). As a result, I was put on a five-day course of prophylactic antibiotics. The low counts mean that I feel the fatigue more, too, so I decided not to fight the masses of travelers this Labor Day weekend, and instead have been laying low at home in Brooklyn. These results were expected; in fact, if my counts were good like last time (11,000), Dr. R. would have increased the chemo again for round three.

One thing is certain: my appetite hasn’t been affected. I’m eating like a horse. I met friends for a great brunch at Alchemy, yesterday, and lunch at ‘Snice, today. Before lunch, I stopped at the farmers market on 5th Ave and 4th St, and made a nice haul of fresh produce. Wait, did I really spend $10 on arugula?! No matter, I’ve paid that for a cocktail, and this ten spot went towards part of two bags of local, pesticide-free fruits and veggies to feast on this week. On a related note, I’ve been cooking and eating at home a lot more, which has been very therapeutic and fun. Except for doing the dishes. I don’t ever find washing dishes fun. Especially since, like most NYC apartment dwellers, I don’t have a dishwasher.

The last eight weeks have flown by, but the dust is settling a bit and I’m getting back into a routine. This was my first full week of work since being diagnosed, and it was very productive. I published a new online course of my own at Udemy.com, Interactive PDFs with Adobe InDesign: No-Code Digital, and another, Design for Coders, which I did for my new client learntoprogram.tv, was opened for early access and will go live in about two weeks.

At one-third of the way done, I’m feeling great and hoping the pattern continues for the next four treatments. Thanks for keeping those prayers, thoughts, vibes and all forms of positive energy coming; clearly they’re working!

Lotsa love,

Joseph/Joe

PS: There’s still plenty of time to support my Light The Night Walk on September 25!

Over A Thousand Dollars in Three Days

Origami heart made from paper money

Click photo for origami instructions.

In just three short days, I’ve already met and passed my personal fundraising goal for The Leukemia and Lymphoma Society‘s Light The Night Walk! Thanks to the generosity of my friends and family, over a thousand dollars will go to leukemia and lymphoma research, and there’s still plenty of opportunities for you to help and participate.

Since the event is over a month away, I’ve set the bar higher, and set a new personal fundraising goal of $2000. If you’d like to donate, please click to visit my personal fundraising page, and if you’d like to walk with me on September 25 in NYC, click to join Team Joe C.

Every amount, no matter how small, will help fund life-saving research and make a difference. Only have a dollar to give? No problem! Better yet, ask four friends each to match you, and now you’ve got five dollars. What, you say you can each afford to give two dollars? Awesome, now you’ve raised ten dollars that will help fund research for treatments that will wipe out cancer!

For everyone who has donated so far, again, thank you so much, and thanks in advance to everyone who will be giving. One last thing, please be sure to ask your employer if they’ll match your donation and make it count twice!