positivity

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.

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

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

First Birthday Update

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Selfie from the SPD Gala. The green ribbon on my lapel is for lymphoma awareness.

Selfie from the SPD Gala. The green ribbon on my lapel is for lymphoma awareness.

I turned 45 last month. Somewhat ironically, my birthday was exactly nine months after I had the biopsy that led to my diagnosis, and that long plus a week after I started chemo. While I can’t say that I was overwhelmed with profound feelings of rebirth, somehow, turning a year older holds a place among the milestones of my recovery, a few of which I reached over the past months.

Last week, I went for my second two-month follow up visit with my Oncologist, Dr. Bruce Raphael, and although I’m still feeling some of the effects of treatment, I got a clean bill of health. I continue to be in remission, and although my blood counts are still low, they’re approaching normal. I’m still feeling some fatigue as my energy is coming back to full strength, so most days I’ll indulge in a nap. Doctor’s orders! I’ll go for a six-month scan in June, which won’t need to be a full PET, but just a chest CT.

Aside from being tired at times, my mood is the biggest thing I’m dealing with. The last few months have been an emotional roller coaster as I came out of treatment and dealt with extremes of happiness and sadness. (I was informed that it’s very normal for people to experience depression and anxiety after finishing chemo, worrying if the cancer will come back, and realizing the intensity of going through a major diagnosis and treatment.) While being in remission is great news, it’s contrasted with family members dealing with cancer and other illness, and grieving the loss of my dear grandma, who passed in March. Although I didn’t find myself emotionally overwhelmed by this mix of events, I had my moments, which I managed with my caregivers, along with making an extra effort to eat and sleep well, and exercise. I’ve been walking at least 30 minutes a day, which is important physically, clears my head, and keeps anxiety at bay.

Being self-employed, I’ve self-approved a medical leave, and because of savings and insurance, I’m fine financially. I pay for long term disability coverage through Freelancers Union, where I also get my health coverage, and can collect benefits until I’m cleared by my physician to go back to work.

Aside from the medical milestone of another two-month checkup, this spring, I attended two events that each had a special part of my revery: the ADIM Conference, and the SPD Gala. At both, I was reunited with many friends who I hadn’t seen since before my diagnosis, but who encouraged me through it, like Hollis (my cancer pal), Jake, Rocky, Shawn, Ina, Jason (thanks for the prayers, they helped!), James, Andrew, Bob “The Man” (my fellow NYU Langone patient alum), Victor, Neil, Nancy, and so many more whose support meant, and stll means, so much to me on this journey. There were friends, too, who didn’t know of my adventures—or who I didn’t know did—but once they heard of them, offered kind words and shared their own stories with me, like Russell, Mary K. and Will, Jeremy, Victoria, Nancy, and Trevett. There are so many others who I haven’t named, but who I thank, nonetheless.

My next big milestone is my one-year anniversary in July, and every year I go without recurring—I have an 80-81% chance that I won’t, and I always throw in that extra 1%—the less probable it is that it will happen. In fact, Dr. R. told me that if I haven’t recurred in two years, I’m most likely not going to. That cuts my race in half, since if I make it to four years, I’ll be cured. As always, thanks to you all for your friendship, love, and support along the way. It continues to be a source of strength and inspiration.

Lotsa love,

Joseph/Joe

 

‘Tis the Season to Light The Night

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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!

Goodbye, Mass

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In August, my chest x-ray showed that the mass in my chest had shrunk from the size of a grapefruit to a golf ball. Last week, I shared the preliminary results of my second PET scan. Today, after repeating the old adage, “a picture is worth a thousand words,” Dr. R. showed me the images you see above. (FYI, despite the fact that my body looks larger in the second scan, I haven’t gained weight, but in fact have lost some.) He’s very pleased with my progress, saying the scan shows, “near complete response after 4 cycles of chemo, and the patient appears to be going into remission.” Best news I’ve heard in months!

Chemo: Four for Four

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Joe on 10/13/13

Selfie, taken this morning. Note my Mac Classic on the book shelf!

With round four last week, chemo is two-thirds done, and I’m happily still sailing through!

Side effects continue to be minimal, and I actually felt a little better this round than the last one, when I felt great except for some fatigue. That’s somewhat of a surprise, since chemo has a cumulative effect, with each round having the potential to tax your system a little more. The only new side effect is a slight tingling and numbness in my hands, which is common, but it doesn’t interfere or hurt at all.

Some have been concerned that instead of “no news is good news,” the radio silence (should we update that to internet silence?) has meant that I haven’t been feeling well or up to blogging. In fact, it has been very much the opposite. As the dust has settled and treatment has become more routine, I’ve been able to work steadily and focus on other aspects of life, so my posts here have been less frequent.

I will be going for another PET scan on Thursday, and will find out the results when I start round five the following Monday. As of the last chest X-ray, following round one, the large mass had shrunk from the size of a grapefruit to that of a golf ball. Want to venture a guess how small it will be in the PET scan? Just add a comment!

Thanks and lotsa love to everyone who has reached out to ask how I’m doing, and has continued to keep me in their thoughts and prayers.