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

 

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