Round Two: New Attitude, New Hairstyle

 As I near the start of my second round of r-chop, it's hard to believe that round one was less than three weeks ago. On the day before my first infusion, I had to page my oncologist for some stronger narcotic painkillers. The walk from the waiting room to the exam room on that Tuesday was more a shuffle than a walk. And I had no idea when I would start to feel better. After a long fe weeks, it felt like I was at the bottom of a very steep hill, with little energy and no view of the crest. 

Today, I went out for my second run of the week. Granted, it's about two minutes off my normal pace and less than half the distance, but I'll take it. I worked the full week, at full strength; went out to dinner for Matt's 21st birthday (outside, of course); and, I've got a new haircut to boot, as my hair started to clump out last Wednesday, as somewhat expected. I'm on no meds to speak of and looking forward to getting round two in the books.

Less than three weeks. 

It's good to keep that in mind as I head into subsequent treatments, be it r-chop or whatever comes ahead. That may be an autologous stem cell transplant (some good background info on transplants here) if the r-chop achieves full remission; or it may be Car-T cell Therapy if we only see partial remission. Car-T is a relatively new and exciting treatment option (more on that here.) 

Time will tell which option is the path forward. We'll do scans after round three. Until then, there's nothing to do but wait and see... and remember that a lot can happen in a few weeks. 

I Can Do This

We bought a couch yesterday. 

That's about as exciting as a 2010 Facebook post, but it's what passes for excitement these days. In all seriousness, the search for a sofa was newsworthy for a number of reasons. For one, our current couch is well past its prime and is a bit of a torture chamber for your back on a good day. More importantly, shopping is not something I tolerate well on a good day; so the fact that I would willingly spend two hours in a furniture store (masked, of course) less than two weeks post infusion is a lot more than just a good sign. It followed a series of milestones whose sum total was an affirmation that I can do this. 

There were some bumps in the road, for sure, as I managed through side effects. The mile nausea, general fatigue, and an annoying dulled sense of taste were at their peak in days 5-9 after infusion; but the biggest challenge for me was not knowing how and when I'd rebound. 

But on Day 10, I worked a full day of work; I took my dog on an afternoon walk; and for the first time in more than a month, I had no back pain without help from medications. And since Day 10, I've only felt better each day. My energy is good and food tastes like food again..

I know there will be ups and downs as I go through the R-CHOP treatment, but these were major milestones for me on my road back. And as great as it is to feel better, for me what's just as important is knowing about what to expect. In the weeks leading up to the diagnosis and the start of the treatment plan, the uncertainty was as debilitating as the physical pain. I dreaded evenings, because what lie ahead was a sleepless and usually painful night, with what felt like no promise of relief. Even as I entered the hospital and we began to put together a plan, every day felt like the same - manage the pain, do some tests, kill a whole lot of time. 

Without perceivable progress, the monotony of recovery is brutal. You can find yourself searching for a reason to get up the next morning. And when I reached my darkest moments, what got me through (beyond the moral support of my family) was finding one thing to look forward to the next day -- some times that was as a simple as phone call with a friend, or even a work meeting (you know things are tough when you're looking forward to a Zoom meeting.) Having that one thing on my mental calendar gave me something to build on. 

Now, as I head into week three, I've got plenty of things to look forward to, including a full week of work, a dinner out, maybe even a short run. And, of course, a brand new, much more comfortable couch.

Enjoying couch shopping.
Yes, the pillows come with it.

 

 

 

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.