From Agony to Gratitude

This will be the first time in several years in which I'll break the one-a-year blog post frequency.  While the cadence is an improvement, the reason driving it isn't great. My lymphoma came back with a vengeance these past few weeks. What started as what I thought was constipation, or gas, or back pain caused by a bad vacation house bed - turned out to be my follicular lymphoma transformed to a more aggressive form of lymphoma, which caused some excruciating pain for a about a week and a half, not to mention six days in the hospital, and a new round of treatment. 

I'll get to that. 

I had intended to write this in two parts: the story of the diagnosis and then the path ahead. But that was getting a bit too rant-ish. But with good reason - our healthcare system is screwed, and it cost me four extra days of agony because of it. I will never forget that and I will never go back to Rhode Island Hospital because of it. But I don't want to dwell on that; I will take that issue up with RI Hospital itself. But to waste my energy - and it's not in ample supply these days - is a bit as futile as road rage. I want to stay positive. It's who I am and how I like to be.  

Let's Start With Gratitude.

I have to start with my family: After coming home from vacation two days early, I was admitted on Noah's 18th birthday and came home the day after his off-to-college party. Stacy kept it all together - kept everyone fed, kept everyone sane, kept herself sane, kept me sane-ish. And the boys picked up the pieces. Their love and support and patience gives me strength. As did the support of my brother and sister - who called, texted, visited and listened, a lot. And my Aunt and Uncle and cousin with support from afar.

My care team. I've known for years that Dr. LaCasce and her team at Dana-Farber are world class. And this last week, they really showed it, along with their Brigham and Women's Hospital colleagues. From the triage in ER (and what a scene that was) to the ER treatment pod, to the oncology unit floor, there is a constant stream of compassion, kindness and competency. It is everywhere and in everyone. It may have taken a while to get a bed (the first night I stayed in a private room in the ER), but from early on, they treated the pain, got me as comfortable as possible, and worked toward a plan. 

Saturday afternoon, after news
 that I would be discharged Sunday.

I've been helped by so many people - Dr. LaCasce, PAs Katie and Linnea, Dr. Jacobson, countless nurses especially Maureen and Christine,  the nurse assistants, the amazing team in interventional radiology (I wish I had a picture of how they were able to take a needle biopsy of me while keeping me comfortable, with oxygen tubes and blankets and padding, and belts, and IVs, and blood pressure cuffs, all fitting in and out of the CT... ), the transport people, the food service staff -- so, so many people. And nothing but caring eyes and smiles all the way. 

And of course, my friends and colleagues - there are way too many to name here. But I've been moved to tears on more than one occasion by a warm note, text,  comment, or offer of support. It made me feel loved at a time I really needed it. 

So, What the Hell Happened

Follicular lymphoma is an indolent lymphoma. It slowly grows, you treat it; it grows again, you treat it. But sometimes the slow-growing lymphoma is essentially taken over by fast-growing lymphoma cells and the disease transforms into a more aggressive lymphoma. Why does that happen? I have no idea. But it typically happens in the first 3-6 years, so it's rare for it to happen after 11 years. 

I had been monitoring the growth as always, with a scan done November 2021. And while there was some small growth of lymph nodes - in the abdomen as always - it was not alarming. We would scan again in October and make some decisions, in keeping with the strategy of treating the lymphoma before the lymphoma started causing symptoms.

But somehow in the last couple months, the lymphoma transformed, most likely into a faster growing, more aggressive Diffuse Large B-Cell lymphoma. And suddenly the small lymph node growth was now not so small, with one group of growing nodes measuring something like 16 cm. That put a lot of pressure on my abdomen and back, thus the pain. 

And What's Next 

Relaxing in the shade,
 after coming home!

While we wait for confirmation from the biopsy done Friday, we will proceed with a treatment known as R-CHOP. I should know what all those letters stand for but the two important ones are R for Rituxan (a monoclonal antibody that I've been on twice before with good results), and P for prednisone, a powerful steroid that treats the pain and the lymphoma. (I've actually started the prednisone already which, along with some pain meds has made me comfortable.)

I'll start the infusion Tuesday and it's an all-day affair. I  repeat that every three weeks for six cycles (18 weeks). After we see how that works, we'll discuss next steps. The main side effects I understand are nausea, which is managed by some good anti-nausea meds, hair loss, which is managed by a razor, and fatigue. 

I'm in a decent enough place. I'm more than relieved to not be in pain and to be functioning and eager to start the R-CHOP to really create lymph node shrinkage. But I'd be lying to say I'm not a little anxious about the success and the steps beyond it. But as always, I'm trying to not think too far down the line. I'm home. I'm comfortable. I'm surround by my loving family (animals included), and I'm cared for by an amazing team.