mass

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.

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

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.