Plot Twist - A Personal Post

​So some health news in my world, not the kind I’d like, but life loves plot twists. This news is why I have not been posting any newsletters since the first of the year.

In late November 2022 I was diagnosed with Non-Hodgkin Follicular Lymphoma (NHFL), a cancer of my lymphatic system. The lymph node in my left armpit had been swollen and cranky for some time and during a routine mammography/ultrasound it was cited as needing follow-up. A biopsy revealed this to be an “indolent” kind of lymphoma, ***very slow growing***, unlike some of the other varieties out there. (Follicular Lymphoma is the most common slow-growing lymphoma and the second most common Non-Hodgkin Lymphoma.) It is considered a "chronic" cancer, of all things. Who knew?

The disease is currently at Grade 1 / 2 (my doc says he thinks it's more a 2 plus), and not in the bone marrow or organs, which is great news. Staging for FL is different than for solid tumor cancers and is based on its location above and below the diaphragm and whether it is in the bone marrow or organs. So a Stage 3 in FL is considerably different than Stage 3 in many of the other solid tumor cancers.

However, due to the multiple spots seen on my PET scan, and their locations, I’m having immuno-chemotheraphy because it’s impossible to determine if all those are the slow type without add’l biopsies. In this case, it’s better to nail those mothers right up front. Since FL can transform into a far more aggressive variety (U.S. Rep. Jaime Raskin, for instance, was recently treated for Diffuse Large B-cell Lymphoma (DLBCL)), we’re being extra cautious here.

Unlike some Non-Hodgkin lymphomas, the indolent kind is not curable, it’s just an ongoing thing that will need treatment every now and then. Remission can be for months, or for decades. Everyone’s mileage varies with this disease, so there is watching, waiting, and then acting as needed. There are many treatment options available at this point. 

I have currently finished  # 2 of 6 “spa” treatments as I call them. one every three weeks if my bloodwork says I'm up for them. The medication regimine is R-CHOP, a blend of three chemo drugs, prednisone and an immunotherapy drug. It is definitely serious stuff so, no surprise, my hair has fallen out and I now have a chilly bald head. I wear a turban and I now know why hairless cats look so grumpy. The hair will grow back. The key thing is to put these nasties into remission (or destroy the more aggressive ones if they’re present) and get on with my life. 

Fortunately, I’ve been vigilant (yes, a bit obsessive) about wearing a mask in public spaces since the pandemic began, which in retrospect seems to have been a wise precaution. I’ve improved my diet dramatically, taking a bunch of meds, and keeping my head and heart in the game.  I continue to write on those days I have a working brain. The oncology staff at Hospital da Luz (Hospital of Light) in Coimbra (Portugal) are wonderful. Our friends in the U.S. and Portugal are supporting us, and my spouse has been a godsend.

So this has definitely been a PLOT TWIST, though it’s a lot more fun when those happen in my books. Any prayers, good vibes, and healing Light sent our way would be appreciated.

I’ll keep you updated, but not inundated with news. Onward to remission.

A PSA — if you have a lymph node that is enlarged and isn’t settling back down after a few weeks, get it checked, even if you are a young person. Or if you have any of these other symptoms.

Don’t let your doctor ignore these. Most Follicular Lymphomas aren’t diagnosed until the disease is advanced because it’s just so stealthy. Like in my case, at least 2+ years of stealth since I first noticed the lymph node change in mid 2021 during the middle of the pandemic. This is definitely a ninja disease.  

Stay well!