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
Chemo: Four for Four
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.
Smooth Mornings
Makings of a breakfast smoothie.
Medicine doesn’t necessarily have to come from a pharmacy. I take prescription and over the counter drugs to manage the side effects of chemo, but what and how I eat is also an important part of that plan. When it comes to my first meal of the day, I had always been a drink-coffee-first-eat-later kinda guy, but since my diagnosis, I’ve been making sure to limit caffeine, stay hydrated, and have a nutritious breakfast within an hour or so of getting up. One of my favorite menu options is a smoothie, because it’s a quick and easy way to boost my fiber and fluid intakes, and it never comes out the same way, twice.
I don’t measure anything or work from a recipe, but there is a general method. First, I take a carrot, a stalk of celery, some frozen and fresh fruit, and maybe some greens, and toss them all into my blender. For the liquid, I splash in a bit of pomegranate juice, then pour in enough orange juice to cover everything. After adding some flax meal for protein—probably a tablespoon or two—and remembering to put the lid on (important!), I blend up some breakfast.
All smoothed up!
The carrots, celery, juices, and flax seed are standard, but I change up the other ingredients based on whatever I have on hand. Because I vary the amounts of the fruits and vegetables each time, the smoothies always taste a little different, even if what they’re made from may be the same. This week, I discovered a combo that I really like: macintosh apple, spinach, and white grapes. Some others that have worked well: blueberry and peach; clementine and peach; mixed berries, pears, and romaine lettuce; pineapple, strawberry, and watermelon; and plum and raspberry. If I’m out of flax meal, I’ll add a little peanut or almond butter, or skim or almond milk.
To save time, I wash, peel, and chop stuff in advance, and store it in bags or containers. That’s good, too, for making sure I can grab a quick snack during the day, and for cutting down on prep time for other meals. I’ve been freezing any fruit that’s getting too ripe, which also cuts down on food waste. Hot tip: freeze cut up produce flat in a zip top bag, leaving some space between pieces, so once it’s frozen you can take out whatever amount you need and put back the rest. Also, store bags vertically, like books, and it’s easier to get them in and out of the freezer.
Smoothies work for me because they’re a fast and easy way to start the day off right, and they don’t get boring if I change up the ingredients. Drinking fruits and veggies in the morning instead of coffee: who would have thought?
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
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!
Hey, Hey, I Shaved My Head, Today
Bald is beautiful!
(Thanks to the Eurythmics, for the inspiration behind the headline for this post.) Yesterday, my hair started falling out in clumps. Today, I pulled a Britney Spears. So, without further ado, I’m debuting my new look. I like it!!! I was born with a full head of hair, so this is quite literally the first time my scalp has seen daylight. Speaking of which, I need to stock up on sunscreen—as well as lollipops so I can rock the Kojak look. Who loves ya, baby?!
After Round One
This is the text of an e-mail, “Joseph Update: 8/4.”
Hello!
Firstly, thanks to everyone for the outpouring of support over the past weeks. Each email, text, call, thought, prayer, vibe, or whatever you’ve done, has helped more than you can know. I’ve done my best to reply to all of them, but apologies if I’ve missed anyone.
In brief: I feel great! Almost bizarrely so. I sailed through the first round of chemo with no real issues. A little achy today, but Tylenol took care of it.
I could not be more impressed with the level of care that I’m getting. All of the providers are friendly, compassionate, top-notch professionals, and not once have I felt like a specimen instead of a person.
Please don’t mistake my optimism for denial. I’m well aware that I may have some rough days. But, I’m not focusing on that. Instead, I’m set on getting through this journey and coming out of it stronger for the experience.
I’ll probably be sending out occasional messages like this one, but have started a blog, Joe’s Lymphoma Adventures (yes, I have a sense of humor about this) and will be posting to that more frequently than emailing. I invite you to follow along at:
www.josephcaserto.com/joeslymphoma
Thank you all, as always. You’re helping me more than you can ever imagine.
Lotsa Love,
Joseph/Joe