CT Scan

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

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

Status: Clean Scan, All Normal, Remission Continues!

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Hello!

I wanted to share a quick update with everyone.

My most recent 2-month checkup with my oncologist, Dr. Raphael, was at the end of June. I got good results of my 6-month CT scan, assurance that everything is progressing normally, and confirmation that remission continues.

Going forward, I’ll see Dr. R. every 3 months, and my next scan will be in the fall. My plan is to continue focusing on my recovery through the end of the summer, and officially return to working part time after Labor Day.

Look for more posts in the next few weeks, and enjoy the summer!

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