Please Help Me Light The Night, Again!

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Me, with my teammates Margaret and Sue, at the Light The Night Manhattan kickoff party in July, 2015.

Me, with my teammates Margaret and Sue, at the Light The Night Manhattan kickoff party in July, 2015.

Thanks to everyone who supported me and helped me raise money through The Leukemia & Lymphoma Society’s Light The Night Walk in 2013 and 2014, and to those who have already given to my 2015 efforts. This November will mark two years of remission for me, which is a very important milestone. If my lymphoma hasn’t come back—and it’s very unlikely that it will—my chances of being cured jump from 80-81% to 98-99%! (More of my story is at my fundraising page.) Your generous donations to Light The Night will help to find better treatments and cures for blood cancers, so patients like me can live better, longer lives. In fact, I personally received one of these treatments, the chemo drug Rituxan (Rituximab). I’m walking again this year, on October 1 in Manhattan, and if you’re able to help, please make a tax-deductible contribution!

You can give in two easy ways:

  1. Online: Please go to http://pages.lightthenight.org/nyc/Manhattn15/JCaserto to donate online quickly & securely. You will receive an email confirmation of your donation as soon as it is made.
  2. By Check:
    1. Please make payable to The Leukemia and Lymphoma Society.
    2. Put Joseph Caserto: Light The Night 2015 in the memo.
    3. Mail to:
      The Leukemia & Lymphoma Society
      Attn: Light The Night
      61 Broadway, Suite 400
      New York, NY 10006

Whether you give $5 or $50, your generosity is greatly appreciated and any amount will make a difference in the lives of thousands of patients like me, who are battling blood cancers. 

Thanks,

Joe

P.S. Please share this with as many people as you can to encourage them to donate as well!

Two Years Ago, Today

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From my Instagram feed on my birthday in April: “Thanks for all the birthday wishes! Celebrated with ice cream sundae this afternoon. (For the record, only the front one was mine.)”

Selfie, taken after my last oncologist visit in June.

July 10, is a kind of second birthday for me. My first one is in April, when I turned 46, and I celebrated it in San Francisco with old friends who I hadn’t seen in a long time. But, this afternoon two years ago, I would visit my primary care doctor with a swollen face, and she would say to me, “This may sound strange, but I’m going to send you for a chest x-ray, because there are nerves that go from the chest to the face, and I want to rule out that there’s nothing there causing the swelling.” About an hour later, I would know that there was most definitely something there: a mass behind my heart, and after a surgical biopsy a week later, I would learn that it was the size of a grapefruit. The next day I would have a CAT scan, and a day after that I would get the news that I had lymphoma.

Two years later, I’m starting to feel that the journey I’m on is taking a new turn. With the diagnosis from a followup visit to my oncologist a few weeks ago that I am, “boring,” because I am continuing in remission with an excellent prognosis, and my chances of being cured improve each day. I’ll have a scan at the end of the year, which will mark two years in remission. If the scan comes back clean—which is extremely likely—it will be my last unless I exhibit any symptoms that warrant another one. At the two year point, Dr. R. said the chance of a recurrence is about one or two percent, and the risk of exposing me to radiation to get scanned becomes greater than the risk of not getting it done. In two more years, at four years with no recurrence, my lymphoma will be cured.

I still continue to experience fatigue and a range of emotions, which is normal, and as he said, “time is the ultimate healer.” My return to work part-time is proof of that in a way, because it has made me realize that I’m not yet ready for full time. Thankfully, I have long term disability insurance, which I get through Freelancers Union, so I can focus on my health, without worrying about paying my rent.

I can’t say I’d sign up for another go around, but my diagnosis of Large B Cell Lymphoma has taught me so much, and given me a different set of priorities. I find it easier to say, “no,” to things and people that don’t fulfill me, and I see the importance of rest and downtime, which before cancer, would usually be the first two things to be sacrificed. My second birthday wish for all of us, today, is to enjoy good health, and experience all the joys that life has to offer.

Light The Night Videos, Starring: Me!

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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

 

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

 

Nothing to See Here

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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

‘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!