Cheers to Seven Years of Remission

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. 

One Year Later

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

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

 

Nothing to See Here

Joseph Caserto, working in a Manhattan Starbucks.

The author, working in a Manhattan Starbucks.

Happy new year! It’s been awhile since I’ve posted. I’ve been getting back into the swing of things after a busy holiday season, which I spent with my family in the Mid-Hudson Valley, and friends in NYC. Santa even brought me my eyebrows, and my hair is growing, as you can see from this selfie I just snapped! Here’s a brief update on my progress since ending chemo.

Many of you may know that I had a PET scan on 12/20. I finally got the results on Monday, and everything is normal, which means that I won’t need radiation. To get techy, the glucose uptake measured three (three and under is normal) compared to the first one I had in July, which came back in the 20-something range. The scan I had after the 4th round of chemo was almost normal—3.1, I think—so we expected this one to be pretty clean. I’ll see my oncologist in a few weeks, and have follow-up PET scans every six months to make sure there are no stray cells floating around, meaning the next one will be in the spring.

My focus remains on staying healthy. Over the holidays, I enjoyed a lot of good food—and a moderate amount of good drink—so I’m getting back on track with my diet, limiting animal protein and sugar, and drinking alcohol at the recommended level. Because my immune system is still compromised, I can’t get a flu shot until next month, so I’m doing everything I can to avoid winter illness. If you thought I was a clean-hand fanatic before, you should see me now, although it will be hard to spot me under the many layers of outerwear I’m sporting to protect myself from the polar vortex. It was about nine degrees here, yesterday, with a windchill of minus fourteen.

Until next time, here’s hoping that everyone is staying warm, and wishing you all the best for a happy and healthy year ahead!


Lotsa love,

Joseph/Joe

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

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.