The Need To Contribute

Cancer can be such a debilitating disease - both physically and emotionally. While a lot of the emotional pain comes from the anxiety of not knowing, and the fear of what will happen, what I've struggled most with these past few weeks is my inability to add anything to any part of my life - my family life, my work life -- anything. It's hard not to feel like a burden. 

I think we all, at some level, have a need to contribute to society. And among the things that define my society most are my family and my work. They are places I belong to and to which I hope I add value.  Both the sense of belonging and sense of value seem central to good mental health. And both have been noticeably missing from my life for the last few weeks.

At home we were preparing for Noah's first college departure and Matthew's return to college. And I've added nothing to that (even less than I usually do, because let's be honest, that's in Stacy's wheelhouse anyway). But even more, I've detracted from it. 

Meanwhile at work, my role has evolved over the last 15 years where I'm very involved in a lot of what goes on. And as we enter a real interesting and pivotal time in our department's evolution, I've felt like I was sitting on the sideline. It felt hard to keep up, let alone add anything, and it felt equally hard to feel like I belonged to the conversation. 

I have to stop now to insert that none of these feelings were anything perpetuated by anyone other than me. My family (see last post) has taken care of me night and day, and my team at work has been incredible - the care and support, and the "we've got this, you just rest and get better" attitude has been a tremendous lift. But being able to contribute helps my ego (in a good way, I think) and the last two days of being able to contribute to meetings, work product, conversations has been a huge bonus for me.  

We'll keep riding the good wave as long as we can -- some of the fatigue and nausea are starting to creep in already.  So I'll need to rest up when my body needs it, knowing that the rest period will just be a pause until I can contribute again.

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. 

Hoping for the Best

I have a very simple New Year's Resolution this year. It's, of course, not the first time that I've taken to this blog for resolutions. Over the course of ten years of on and off blogging (mostly off these last few years), I've resolved to feed my mind, body and soul, and to be more accepting and have fun, among other things.

But first a little backstory. I am an optimist by nature -- territory I've also written about over the years. But theses past two years have tried the faith of even  the most eternal optimist. You may have noticed there's a pandemic out there that's killed millions, turned lives upside down, and tested the resilience of individual, family, and community. 

So on the one hand, you have the pandemic, and on the other hand, cancer. Scans in early 2021 showed tumor growth compared to my 2019 scans and as I booked my November appointment, it was with the expectation that we would be talking about treatment options for 2022. 

The familiar expression is: hope for the best, but prepare for the worst. Smart business planning perhaps, but also a guard against disappointment. Don't get your hopes up and you won't be let down. And I was bracing against the challenges that 2022 treatment might present: how to attend my nephew's wedding in March; how to visit Matthew in Copenhagen during his semester abroad -- presuming it still happened. 

But there's a problem with that thinking; when you prepare for the worst, you start expecting the worst -- or at least fearing the worst -- and that anxiety crowds out any space for hope, for optimism. And it's hard to be happy if you are living in a state of perpetual anxiety.

I like what I wrote back in 2013 when I said that "every year is filled with its moments of greatness, of pure happiness and gratitude... Sometimes, they're so tiny, so fleeting that you can miss them if you don't pay attention." 

If you're too busy expecting the worst and preparing for it, you can easily miss them.

A funny thing happened in November. Instead of my scans showing more growth, they actually showed some smaller tumors and others pretty stable. Will I need more treatment in 2022? I don't know. Right now, I have an appointment in a couple months and then more scans in August. So we'll see. But importantly, I feel fine. (I ended 2021 and started 2022 with a run.) And  so I'm simply going to hope for the best. Period.  

And that leads me to my New Year's Resolution, which is simply this: I will allow myself to Be Hopeful; I will allow myself to Be Optimistic; and I will allow myself to Be Happy

It's a resolution I hope a lot of people take. 

On Ten Years

Approaching the 10-year mark of being diagnosed with follicular lymphoma, I anticipated the day being momentous -- not necessarily a celebratory day, but a memorable one. I would post something on social media, note it in a few lymphoma groups to which belong, maybe even recognize the day here on this quasi-dormant blog. The reality is, I forgot about it. The day came and went, and here we are three weeks later. 

This is a good thing. 

On July 1, 2011, the day after I was diagnosed, here's what I wrote:

"When I think of the future and try to project out 10/20 years, that's when I start to lose it. When I focus on the present -- how I feel today -- fine, thank you-- I'm calm and rational.

I remember eating dinner before my softball game while Noah and Stacy played alphabet go fish. I was watching him play and he was getting silly and having the greatest time -- laughing and playing -- and I wasn't thinking about my dx at all."

And so here we are, 10 years later. Noah's no longer playing alphabet go fish - he's a rising high school senior and   Matthew's halfway through college. We have two dogs and I've been through two different treatment cycles - six rounds of Bendamustine and Rituxan in 2012/2013, and four rounds of Rituxan plus Imprime in 2017,  and I'm still feeling fine. Always have been, even if it's likely that I'll be doing another round of treatment in 2022. But 10 years later, there are many more options than there were in 2012, and things like CAR-T Cell therapy are there as possibilities, along with some of the more "conventional" treatments.

Days pass often when my lymphoma hasn't even crossed my mine; but days pass when it has. When I think of retirement or of buying our own lake house instead of renting one for a week each summer, there's a little more urgency to do it now and not put it off for five or ten years. It's not necessarily a seize-the-moment kind of thinking, but it is a reminder that you can spend so much time planning and thinking about what you're going to do, that you can leave yourself little time to actually do it. 

So this is life with follicular lymphoma. It's not a dark cloud that overhangs my daily life, but more an occasional storm that I can sometimes spot on the horizon, and hope that it blows through our life quickly and with little damage in its wake. 

A view from the Narrows looking out at
 Upper Bay on Little Sebago Lake