Dr. R. called with the initial results of the PET scan I got this morning. The results show only a “small amount of minimal involvement.” In other words, the lymphoma is almost completely gone! Keep sending those positive prayers/thoughts/vibes/etc. Just two rounds of chemo left; full speed ahead!
Updates from Joe
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.
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!
Shrinkage
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?!
Two Weeks After Starting Chemo
Buzz cut selfie
Still continuing to feel great! (Knocking wood, now.)
Had the first follow up with my Oncologist yesterday and all is fine. Since I did so well with the first round of chemo, they’ll up the dosage of the next one. Guessing I’ll be more fatigued afterwards, but otherwise don’t anticipate any side effects that I can’t tolerate, or don’t have a remedy for. Since I’ve been off the Prednisone for several days and the facial swelling hasn’t returned, the Dr. feels that the mass has obviously shrunk.
Hit my first hurdle on Sunday night when I had a lot of discomfort in my lower back and legs, due to a shot I get to boost white blood cell production. Tylenol and ice took care of it for the most part, so not the end of the world. They feel that I may not have the pain as severely next time, if I have any at all, and will give me a stronger pain reliever if I need it.
Hair started to fall out today, exactly 2 weeks after starting chemo. This is what I expected, and so had set up an appointment for a nice summer buzz cut, which is a look I actually like a lot! Not sure how much more will come out, but will go “Kojak” as my Grandma used to call it, and buzz it closer if it starts to get patchy.
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
The Beginning
Hello, everyone,
Some of you may be hearing this news for the first time, but many of you have been in the loop with what’s been going on with me over the last few weeks by word of mouth, and I appreciate that you’re keeping each other up to date. I have been diagnosed with a very treatable type of Lymphoma, and I’m doing very well.
I started experiencing some facial swelling, and my excellent Primary Care Physician, Dr. Amy P. Huang, sent me for a chest Xray as a precaution, which picked up a large mass, about the size of a grapefruit (as scary as that sounds, I don’t even feel it) behind my heart, and above my lungs. After CT and PT scans, and a surgical biopsy last Thursday, the final pathology confirms a diagnosis of Large B Cell Lymphoma, which is the most common variety. It has been liberally staged at 3 because there are two small nodes—the largest of which is about 1-2 cm—just at or above the borderline of the lower half of my body, and involvement in the lower half is a stage 3 factor. I also have a high Lactate Dehydrogenase (LDH) enzyme level: normal is 600, mine is 1500.
This is a non-Hodgkins type of lymphoma, which is not what we originally thought, but its prognosis is virtually identical to Hodgkins, often referred to as “the good kind.” There is an 80-81% chance that treatment will prevent a recurrence, and if there’s no recurrence within 4 years, it’s considered cured.
Because of the size and location of the mass, we’ve been moving ahead fast, and I had my second chemo treatment, today. It will be a six-cycle regimen of R-EPOCH (R-CHOP plus Etoposide) over 18 weeks. I’ll go to the infusion center every day for five days—they’re open weekends—to get a new drug, which is administered in a pump that I wear in a fanny pack hooked up to a PICC. That’s basically an IV line that was surgically put in my arm yesterday, and will stay in for the course of treatment, so I don’t have to be constantly stuck with needles. My Oncologist, Dr. Raphael, and his Physician’s Assistant, Moira, are wonderful, and have developed a thorough plan of drug and nutritional therapy to minimize, if not eliminate, most side effects. I will loose my hair in about 3 weeks, and will likely be fatigued on some days, but have remedies for any nausea and GI problems that might occur, including a prescription for anti-nausea pills that Moira said, “will collect dust and never be opened.”
I’m getting my care at NYU Langone Medical Center, here in NYC, and the facilities and care are all excellent. I’ve discussed getting a second opinion, which my providers are on board with, but have not decided when and where, yet. Most people go to Memorial Sloan Kettering, and that’s likely the option that I’ll investigate. Meanwhile, I did ask my Oncologist to present my case to Tumor Board, which is a group of other physicians from multiple specialties who review the case and discuss the treatment.
One favor I do have to ask: I have decided not to do my own online research about the disease or medicinal treatments without discussing it first with my providers, so if you do your own, please do not share the results with me, at least without asking me first. I need to stay focused on developing the treatment plan and process that my caregivers and I feel is right for me, and while I truly appreciate the motivation and concern behind wanting to share advice, I don’t want to get overwhelmed and confused.
However, I have been doing a lot of nutritional research, and am always looking for good things to cook and eat, so those are welcome! FYI, I can’t take any herbal over the counter supplements or remedies because of interference with the medications I’m on, but those may be an option for after treatment.
Thank you all for your love, help, support, prayers, advice, thoughts, and whatever else you may have sent, whether I’ve known it or not. Every bit of positivity helps more than you can imagine, and just knowing that someone’s there to answer the phone if I need to call is a huge asset to have in my arsenal of coping mechanisms. I’ll be sending out some regular updates like this one, and may start a closed blog to make it easier for anyone who wants to stay up to date more regularly. Finally, I’ve been trying my best to reply to everyone, but it may take some time. Again, please know that I appreciate every single message, along with all your love, good thoughts, and prayers, and will be in touch, again, next week or so.
Lotsa love and hugs,
Joseph/Joe