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