Caesura - The Calm before the Chemo

In music, a caesura is a stop in the music. A pause in the sonic landscape usually inserted into the composition to emphasize a feeling a composer intends the audience to feel. Think the abrupt pause in Holst's Jupiter: Bringer of Jollity before the theme returns in grander form, or the break in the music as Mimi breathes her final breath in Puccini's La Boheme before those damned gut-wrenching French Horns play her fate theme. Or, to use a more colloquial example - "STOP - (caesura) - It's Hammer-time." It's notated as shown here, two hatch marks cutting through the musical staff. I've always imagined it as the space in between those lines, you have everything that came before the first one, and everything that will come after the second, and you have this profound reverberating silence in the space between. That's where I am now in my cancer journey, the caesura.

The first line, to carry on the analogy, was my final pre-chemotherapy appointment this morning with Dr. E, and I am now scheduled for my first infusion on December 7th (a date which will live in infamy...shout out to my history nerds who get that), which represents the second line. So now I am in the reverberating quiet in between, the space between that appointment this morning, and the first infusion next week.

A caesura can be used to reflect on what's come before, and prepare for what is to come, and that is how I'll use mine.

Wrapping up the pre-work: quitting my "other full-time job."

In my first post, I mentioned that scheduling and executing all of the necessary appointments felt like having a second full-time job. Fortunately, that's mostly behind me now. To recap, I had:

1. The initial appointment with my PCP (Dr. A)

2. An ultrasound of the lymph node

3. a biopsy of the lymph node which resulted in the diagnosis

4. an introductory appointment with my hematologist, Dr. E

5. a PET-Scan

6. an Echo-Cardiogram

7. a bone marrow biopsy (not as ouch as I thought)

8. a port-placement surgery (very ouch)

9. 3 different visits to the endocrinology lab for banking mixed in to all of that.

10. a follow-up appointment with Dr. E once all the above was finished

This was spread across two hospitals, and about a week and a half of time. It was the most surreal whirlwind, I never had time to stop and think about what was happening, which may have been a mercy, I might have gone a little mad in between all that if I had the time.

I spoke about the PET scan in the first post on the blog, so I'll skip the re-cap up until the bone marrow biopsy.

The magic word is "Wolf."

The piece of all of that I was dreading the most was the bone-marrow biopsy. I don't really know anyone who had one, or at least, no one I know spoke up about it, but my imagination was conjuring images of giant needles and serious amounts of pain. That was a bit of drama on my part, the reality was totally fine.

I arrived early that morning to the radiology lab where the procedure would be conducted, and met my intake nurse, a 60 something year old marine vet named Wolf. Wolf is my guy, we're good buddies now. He's a wizard with an IV needle, I hardly felt it, and he's a music lover, so we had lots to chat about. He was telling me all about the shows he used to attend back when Boston had a respectable underground music scene (before they closed all the charmingly filthy, tiny venues, but that's another story), and we compared notes on different visits to the theatrical altars of Metallica, Springsteen, and Elton John.

Wolf wheeled me into the operating room (can I call it that for a minor procedure?), and helped me roll over face down onto the table. He hooked me up to the IV, and leaned down and said this: "remember, if you need anything, or if you get uncomfortable, the magic word is Wolf..." aaaaand then he dosed me with Fentanyl...

...which I did not hate.

I knew going in that I could either fight the drugs and let my anxiety win, or I could do the lab staff a favor and try to lean towards the relaxing feeling now coursing through my veins, so I chose the latter. I tried to encourage my mind towards that relaxation, and it was working... right up until I noticed that the radio was playing Christmas music, and then I was fixated on that.

"WOLF." I said.

Bless him, he was right there ready to up the fentanyl, but I shrugged him off, and let him know that there was something too perverse about getting a hole drilled in my hip to It's the most wonderful time of the year and asked him if he could switch it to a classic rock station. Specifically I asked for Bad to the Bone by George Thorogood and the Destroyers, but that was not to be. He landed on John Mellencamp. That was fine.

And then, before I knew it, I was feeling the sensation of a tiny drill grinding against my hip bone in the small of my back (think just right of where a tramp-stamp would be if I was that classy), and my friends, I did not care at all. I can see why illicit fentanyl is a problem - it's scary powerful.

Mom was with me for this appointment, and was waiting for me as I was wheeled out. We had a short exit convo, the drugs cleared from my head pretty quickly (though it takes 24 hours to clear my body), and we were on our way to reward ourselves with a treat from Cafe Beatrice in Cambridge (consider this my ringing endorsement) - a cinnamon roll made with croissant dough and baked to kouign-amann like crispiness with salt and maple and... ok I'm getting off-track here. Your boy likes his pastries. Anyway.

That was Tuesday. I had one half-day of work, and then it was time for Thanksgiving with family. I won't go into too much detail here, and if you read my gratitude post from last week, you got an idea of the vibe, but it was lovely to spend time with my sister and my nephews, and my mother outdid herself with the feast, as she always does.

The new anxiety - getting past the benchmarks

At some point during the 45 minute drive back to our home after Thanksgiving dinner, a new anxiety found its roost in my chest. I had been looking forward to Thanksgiving as one of two last fun, good things, and now it was behind me. I hadn't had to take an Ativan since I met with Dr. E for the first time, but that night, I needed one. I couldn't settle, my chest felt tight, I felt sad and pensive, but I needed to sleep because the port placement surgery was scheduled for the next morning.

Hanging with Wolf, Part 2

So here I was hanging out with Mr. Wolf again the next morning. I was way less worried about the port placement surgery than I was about the bone-marrow biopsy, but I had them backwards. The port placement was way more intense. First of all, Wolf showed me an example of the port itself before the surgery. It looks like a little round Lego with three bumps on it, attached to a line that they have to thread down my vein. The purpose of the port is to give the nurses who prep me for chemo an easy access to my bloodstream, and to protect my veins from repeated stabbing. It lives under my skin, just below my right collarbone. Seeing it, and envisioning the placement of it, made me look forward to that fentanyl dose I was about to get, because friends, I did not like it one bit.

Once again Wolf wheeled me into the OR, reminded me of the magic word, and all proceeded similarly, only this time I was face up which made it way worse. I'm also sensitive to anything near my throat, so my anxiety was astronomical this time. I actually asked for a second helping of the drugs, not something I would usually need. Wolf provided, and the team finished their work. They sent me home, K was with me this time and she took good care of me, she put me straight to bed.

I was able to muster enough energy to have dinner with my sister and brother in law before they were to depart the following morning, and then I crashed.

Update from Dr. E

At some point over the course of that post-thanksgiving Friday, I received an expected call from Dr. E. I haven't mentioned this yet, but part of the information gathering involved sending all of my lab work over to the main Dana Farber campus downtown, and having it reviewed by the head of Hematology there, Dr. A (different Dr. A than my PCP). They needed a second set of eyes, because the kind of lymphoma I have is categorized as aggressive, and Dr. E and I agreed it would be best to have multiple doctors weighing in. Dr. E had good news and bad news, now that he'd heard from Dr. A. The bad news was that this is not "diffuse" lymphoma, it's "high-grade." The good news was, it's barely even stage 1. So, my official diagnosis, stamp it on my chest, is:

High grade Large B-Cell Non-Hodgkin's Lymphoma NOS

The NOS stands for "no other specification," which feels redundant to me, but I don't have a doctorate so what do I know. He told me we'd discuss it further in our appointment on Monday (today).

That brings us to this morning.

The first line of the Caesura - this morning's appointment

All of this information gathering was leading to this morning. This was the date where we'd determine if I could travel as planned to Austin with my company, and more importantly, what the shape of chemo would look like.

We started with a blood test, to see if it came back any different than the test I had approximately 35 years ago (in reality, just 3 weeks). Good news there, no discernable change, which means the cancer hasn't meaningfully progressed. The only outstanding question was this: due to the "high grade" classification, Dr.'s E and A were considering using a regimen called R-EPOCH instead of R-CHOP. EPOCH is more invasive, higher incidences of side effects, but it's more aggressive, so the thought is it might be right for the more "aggressive" version of lymphoma that I have.

That said, this is such an early catch, my doctors agree that R-CHOP is the right course, at least initially, so that's where we're headed. Four rounds of R-CHOP spaced 3 weeks apart, followed by two additional cycles of Rituxan (the R) an additional 3 weeks apart.

There may be some radiation, that's TBD, but for now, this is the plan, and Dr. E gave me the go ahead to take my trip to Austin.

The profound silence between

So December 7th is the second line of the caesura. I have a little over a week before I go "through the looking glass," and now I am in the pause, the space between. I feel ready in some ways, we have our battle plans drawn, I have come to terms with what's coming, and in other ways, I'm still terrified.

When I think about the plan, I feel basically good. It's all the ways the plan can change that scares me. I've read about chemo induced pancreatitis putting people in the hospital, the port can get infected, I am prone to more intense disease due to my compromised immune system in the days following chemo, there's a maelstrom of possibilities that I can't stare into directly, lest I risk my sanity.

Then, there's the effect on those I love. My wife came into my office today, and we were chatting, and suddenly there were tears in her eyes. When I pressed her for the reason, she said "I just don't want to see you in pain, and I know you're going to be."

I paused after writing that sentence to reflect on the moment, it still feels like the bottom of my chest dropping out. I can't comfort her, she's right, I will be in pain. All I can say is that I'll get through it. I hope she knows that she's a huge part of the reason I can confidently say I'll get through it. If she doesn't she can re-read this and be reminded.

There's my parents. My life has been blissfully free of intense hardship, because they worked incredibly hard to make it that way. My mother is a fixer. She fixes things, she dedicates her vast reserves of energy into the doing of a thing, until the thing is done and the problem is solved. She can't solve this one, she has to trust my medical team. Won't stop her from trying though, bless her, and she'll find a million ways to make it easier on me between now and the finish line. My dad is quieter, but I can tell he's feeling this too, certain moments in his eyes I can see how it's affecting him.

I am someone who, when you boil it down, lives not for myself, but for other people. I am happiest when I'm making other people happy. It's hard for me to not be able to fix this thing I'm going through for them.

and yet...

Just before I sat down to write this blog, I had a conversation with a dear friend whom I haven't spoken to in too long. He's someone who knows me well, and has known me since I was 18. Aside from the joy of reconnection, we discovered a lot of positivity coming out of this recent diagnosis of mine. I am someone who revels in connection, and I can feel my community drawing closer, sending out lines, letting me know that they're there. I can feel my wife, my parents, my sister, my friends, everyone searching the intention of the relationship they have with me for ways they can participate in what I'm going through. I get a buzz on my watch every time someone reads this blog, and it tells me what city they're reading from. I cannot begin to describe the joy I feel every time I get that buzz. It's like a beating heart representing a whole lotta love from a whole lotta people.

Maybe you, dear reader, and everyone you come into contact with can be a little better after reading this, a little more willing to be vulnerable, to trust. If that can be a result of me sharing this journey, then it will be worth it.

Approaching the beginning

So now I rest in the caesura. I will probably take a break from posting until my first infusion, take some time to take care of some work, pull my people close, spend some time eating bbq in Austin with some good friends, and store up my energy for the winter to come.

and then?

I'm gonna beat this thing.