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

 

Midterm Report: Chemo Trifecta

Ten weeks have passed since my Lymphoma adventure started. I continue to do very well, and had a great week on the journey I’ve been taking.

I finished round 3 of chemo last friday, and the side effects were, again, minimal. The most significant has been the fatigue, which an afternoon catnap and a tall half-caf from Starbucks pretty much takes care of. My biggest worry, like last time, was reacting to the Neulasta shot that I get to reduce the risk of infection while my white counts are low, a condition called neutropenia. People often experience bone pain, which I did pretty severely after the first round, but much less so after the second one. This time, it was about the same as round 2, maybe even slightly less so, and was again manageable with a little Tylenol.

I was able to connect in person with some friends for lunch and coffee—nice to see you Linda, Gloria, Joni, Ted, and Bill—some others for dinner and Scrabble—good game Jim and Kristy (btw, check out their sites if you need a massage or copy editing, respectively)—and also meet face-to-face for the first time with Zeth, my new Cancer Pal and colleague at NYU SCPS CADA. (Seriously, everything at NYU has to have at least three words in its name and an acronym.)

On the career front, I continue to stay busy, which is helpful to keep me from going stir crazy as treatment becomes more and more routine. I’m focusing on my online teaching, which lets me work from home and have a flexible schedule. That’s a huge plus if I have appointments or just want to take a break and rest a bit. My new course, Design For Coders, for new client LearnToProgram.tv, is open in early access for beta testing, and I self-published another, Interactive PDFs with Adobe InDesign: No-Code Digital (click here to get it for free through the end of the month). I was also excited to be honored with a 2013 American Graphic Design Award!

It’s a little hard to believe that I’m over the halfway mark, but I’m looking forward to continuing full speed ahead through the second half, and having a strong finish in November. Thanks to everyone for your continued love, support, and positive thoughts/prayers/vibes/energy. Lotsa love to you all!

Oh, and PS: I ordered the 32GB iPhone 5s in Space Gray. 🙂

Second Round Rundown

Joe in Cap and Black Tee

My friend, Carmen, snapped this pic of me, today.

I’m happy to report that I’m two for two! My second round of chemo went very well, with minimal side effects.

Dr. R. increased the dosage this cycle because I did so well after the first one, but I felt no differently for the most part, other than being slightly more tired. This gave me license to indulge in one of my favorite guilty pleasures: the afternoon nap.

I’m also happy to report that my reaction to the Neulasta shot was much less severe. This was expected, because I had less disease. This time, on a scale of one to ten, the pain in the bones of my lower back and legs only got up to a strong one at the most, and two Extra Strength Tylenols once a day took care of it. Last time, it topped off at a strong six, and I took the Tylenol every six hours. That time, the medication wore off at the height of the pain, after only about three and a half hours, leaving me to deal with it until I could take another dose. I also tried a preventative remedy that my Mom passed on—many of you know that she’s also an RN—which seems to have worked, and was recommended through an Oncologist in her medical community: one Claritin the evening before, of, and after the shot. I’m a good patient (if I do say so myself) so I first made sure to clear this with Moira, my fantastic RN/Hematology Nurse Practitioner, before taking anything that hadn’t been prescribed by their office.

The only real issue has been low white blood cell counts: 1500 total with 800 neutrophils (the NIH defines normal as 4,500 to 10,000). As a result, I was put on a five-day course of prophylactic antibiotics. The low counts mean that I feel the fatigue more, too, so I decided not to fight the masses of travelers this Labor Day weekend, and instead have been laying low at home in Brooklyn. These results were expected; in fact, if my counts were good like last time (11,000), Dr. R. would have increased the chemo again for round three.

One thing is certain: my appetite hasn’t been affected. I’m eating like a horse. I met friends for a great brunch at Alchemy, yesterday, and lunch at ‘Snice, today. Before lunch, I stopped at the farmers market on 5th Ave and 4th St, and made a nice haul of fresh produce. Wait, did I really spend $10 on arugula?! No matter, I’ve paid that for a cocktail, and this ten spot went towards part of two bags of local, pesticide-free fruits and veggies to feast on this week. On a related note, I’ve been cooking and eating at home a lot more, which has been very therapeutic and fun. Except for doing the dishes. I don’t ever find washing dishes fun. Especially since, like most NYC apartment dwellers, I don’t have a dishwasher.

The last eight weeks have flown by, but the dust is settling a bit and I’m getting back into a routine. This was my first full week of work since being diagnosed, and it was very productive. I published a new online course of my own at Udemy.com, Interactive PDFs with Adobe InDesign: No-Code Digital, and another, Design for Coders, which I did for my new client learntoprogram.tv, was opened for early access and will go live in about two weeks.

At one-third of the way done, I’m feeling great and hoping the pattern continues for the next four treatments. Thanks for keeping those prayers, thoughts, vibes and all forms of positive energy coming; clearly they’re working!

Lotsa love,

Joseph/Joe

PS: There’s still plenty of time to support my Light The Night Walk on September 25!