From the Mountain-Top: Updates and thoughts from the halfway-point.

Starting with one of my favorite pictures of K and I on top of a mountain in NH. Partially because it's fun, partially because hey look at all the facial hair I used to have. Mostly because it's an apt metaphor for where I am in my treatment at this point. Once I'm out of the chair, I'm officially halfway through.

I'm currently receiving my third dose of the full R-CHOP regimen (shout out to Nurse A if you're reading!). One more full dose after this, in another three weeks, then two more infusions of just the R (Rituxan). Before my fourth full dose, I will have a PET scan to make sure that the treatment is as effective as it seems to have been so far, and as long as that comes back looking the way we expect it to, Dr.s A and E won't add any additional infusions to the treatment plan, and I'll be fully finished with Chemo in time for my 36th Birthday in April. Save the dates are going out next week.

Let's get Vulnerable

Alright so, this period ultimately was a little harder on me than the first. That said, the hardship was more psychological than physical. If you've been reading this blog regularly, then you know that the hair loss was something I profoundly was NOT looking forward to, and ultimately it was traumatic but in different ways than I anticipated.

I talked at length about losing my hair in the most recent post before this one, and when I posted a picture of myself with my head shorn, many of you reached out and said super kind things about it looking good. I appreciated that so much, vanity is one of my more present vices, and you all took what was a pretty crappy moment for me and made it a lot better. The nice comments were so pervasive that I even started to like the look myself, toying with the idea of continuing to shave it after Chemo if it grows back in a way I dislike. I was feeling like I was past it, over the worst part, and at peace...

...but then my beard fell out.

Or, more accurately, it started to fall out in patches. When I'd lay down at night and fall asleep with the side of my face on the pillow, I'd wake up to bare spots that had rubbed off in the night. This new development shattered the peace I'd made with this whole thing. I liked the "bearded bald guy" look, but now even that was being denied me. I shaved it. Then I took a picture. I am going to post this picture here because I want people who are reading this to understand that while yes, my spirits are generally high and good, there are low points. I am strong, I'm getting through this, but it still sucks. Maybe if you're reading this, you're going through your own Cancer journey, or know someone who is. If they look like this, sit down next to them and just be there. That's what K did for me, and sometimes that's the thing I need. No words, no comforting, just be there with me.

I hate this picture, I don't want to share it, but I am committed to authentically representing my experience, so here it is:

I know, I know. I don't look bad. That's not why I hate the picture. I hate it because it's taken at the moment I felt the lowest in this entire process. The moment when Cancer has been the most real for me. If you know me, you know that look doesn't show up on my face often, ever even, but in that moment, that look is about how I felt. I hate this picture, but I also love it. It's real, raw, unfiltered me. Gotta love that guy, I only get one me.

Reminds me a bit of a painting I saw in Paris last year - A self-portrait Van Gogh painted towards the end of his life from the asylum he had entered at that point. It's the blue one where he's facing the viewer straight on. The inscription next to it speaks of Van Gogh sending it to his brother as a way to demonstrate that he was doing "better," but when you look at it, and you look at his eyes, you know he's still hurting. That's why I needed to include that picture. I'll put an image of the painting at the end of this post for you.

In the mean time, one more selfie - from a little over a year ago, to demonstrate just how different I look now:

Had to include the dog for extra internet points/palate cleanser energy.

It's not really about the hair loss. At this point I've made peace with where I'm at, it was just a tough moment, and it felt important to articulate in this space.

I had a palate cleanser myself during all of this -- my sister. She lives in another state and we don't get to visit super often, but she came up over New Years. We have a great relationship, and she's often occupied the role of "comic relief" in my family. She definitely helped lighten the mood, and it was lovely to get to spend some time with her.

Infusion Allusion

I'm nearing the end of my third infusion as I mentioned up above, so let's talk a little more about all that shall we? How bout a good ol' "a day in the life" section?

My morning is basically normal, get up, shower, make breakfast and coffee, do a bit of work, you know the normal stuff. Only difference this morning is the wardrobe choice and taking the Prednisone.

As I've mentioned before, the P in R-CHOP stands for Prednisone (P is for Prednisone, that's good enough for me!), a hefty dose of steroid that is given to help reduce side effects/symptoms. It also kinda makes me feel like I have the energy of 10 border collies with an anxiety problem.

As for the wardrobe, I'm rockin the sweatpants I treated myself to, the port access shirt (think a black long sleeve with lots of zippers), a zip up hoodie, and a green Scaly cap my MIL gifted me for Christmas. If you are ever going through Chemo, get a port access shirt. The nurses love it and it keeps you from stretcing out your crew necks.

So with proper outfitting, and the prednisone and breakfast coursing through my veins, I pack up my "chemo kit" and K and I begin the trek across town to the hospital where I receive my infusions. Check in process is easy, I'm starting to get to know the staff, they're always friendly and kind.

Then it's time to have the port accessed. Here's where shit gets weird y'all.

I can taste it.

Yup, you read that right. When they stab the needle into the port, the first thing they do is flush it with saline, and the second that saline enters the port, I can taste it in my mouth.

The human body is weird y'all.

Apparently it's normal, some people can, some people can't, kinda like the Cilantro thing. It tastes salty, like a medicinal, briny flavor. Not my favorite thing. It turns out I'm gifted with the ability to taste all the drugs that they run through that port. All of you out there who have sent me ginger candy?? THANK YOU. Totally kills that gross flavor.

So the intake nurse gets the port ready to go, and draws blood that then gets sent off for analysis. That analysis dictates certain specifics of the Chemo that I'm going to get infused with a little later. Next up is a check in with the Doctor once we have those results (usually about an hour of waiting), and then it's to the chair where my nurse for the day will actually administer the Chemo.

I talked about the first infusion already in a previous post, so I won't go into too much detail here, but there are some differences from that first session. First off, they don't hit me with nearly as much Benadryl as they did that first time. They are also starting to wean me off of certain preparatory drugs as I am tolerating the Chemo well and those drugs were more on the "just in case" side of things.

The other big difference is the Rituxan. It was administered last the first time, remember? It's the one they worry about anaphylaxis so they do it last and super slow, but once we know my system can handle it we can move through it faster. So, what faster looks like in this case is actually not using the port and a drip IV bag, it gets administered intravenously. Big ol needle goes into my belly, and the nurse injects two syringes full of the stuff.

Getting an intravenous injection is very, very strange. It can hurt without warning and quite a bit, which is solved by the nurse adjusting the pacing down a bit. Additionally, you can sort of feel the liquid spreading through out the layer of skin she's injecting it into. Super weird.

Was a shorter day today, checked in at 10:15, checked out at 3:30. Now I'm home, feeling tired, and a bit of nausea creeping in. Just took a Zofran which will hopefully stop that in its tracks.

"Funny" story

So look, when you're on a medical journey the way I am, little things can be big scary. Let me give you an example: A few weeks ago, for my Dad's birthday, we went to a favorite Italian restaurant for dinner. I was feeling pretty solid, had stopped taking the last round of prednisone the day prior so probably still had a bit in my system, but overall felt pretty normal. After a great meal, we ordered dessert. Now, I love an espresso with Italian style desserts, but I also am, you know, on Chemotherapy and sleeping is difficult enough without a 9:00 shot of espresso. So I asked the waitress - "do you have a decaf espresso?" she said yes. Great. I ordered one.

Few minutes later, my apple watch buzzes. Instead of the usual headline, teams message, or obnoxious Best Buy ad, it was a notification that my heart rate had risen to about 125 if I remember correctly. Simultaneously, I started to feel hot, and like I needed fresh air. So, I went and stood outside for a few. The heart rate came down a little, but not to what I would consider a resting heart rate. I was feeling a little better and there was dessert on the table and come on, I'm not going to leave dessert sitting there... so I went back and sat down. When the waitress returned, I asked "So this espresso, is it really decaf? I'm just asking because I'm dealing with chemo right now, so everything makes me nervous, and I have a super high heart rate. If it's just from the espresso, I'm solid, but I need to know because otherwise I'm going to the ER."

Poor thing, it was an honest mistake. She copped to it immediately, and was mortified at the error (to the point where she actually had her manager call my mother, who had made the reservation, the following day to check up on me).

But here's a funny thing. Both my mother and my wife were ready to fight that waitress (bless them, it's special to have people who care so much they would literally rip the head off of anyone who hurt me, intentional or not). I wasn't ready to fight the waitress. I didn't want anyone to fight the waitress. I wanted the waitress to know that I was more or less ok, mistakes happen, and it is not the end of the world. I could tell by the look on her face that she was frightened of the consequences of the mistake not for her, but for me, and that was enough to prevent my anger from rising.

I signaled to my mom and to K to de-escalate, thanked the waitress for letting us know, and gave her an excuse to run away by asking for the check (which she took a ton of things off of as a gesture).

On the way out, I made eye contact with her, mouthed "don't worry, I'm ok" and gave her a big smile.

So what's the point? Well, two things. First of all, it's what I said above. Little things can become big scary, even when they're ultimately benign. The other thing I've been pondering about this moment is how profoundly that waitress felt for me in that moment. I said the word "Chemotherapy," so that plus my bald-itude made it pretty clear that I'm a Cancer patient, which colored her reaction to the situation immensely. In that moment, I could have pressed her to feel worse, if I felt like that was the right choice. It wasn't. What it became was that moment of vulnerability and connection. She made a mistake, she felt terrible, and in that moment she was essentially at my mercy. What would I have gained from making a scene? Instead, I hope she walked away from that experience a little more inclined to be extra careful when people ask for decaf, and lightened a bit by the knowledge that, at least in that moment, it was safe to be vulnerable.

I actually love that it happened. I was fine, and we left her a big tip, and maybe that interaction was meaningful for her in some way, who knows, but it's possible.

That's why I share what I'm going through. I've received feedback that this blog has been a meaningful read for many people, in many different ways. Some in ways that completely surprise me. That makes me feel good. I'm dealing with this disease, it's going well, but I need it to be something more than just my struggle, I need it to be useful in some way. So if I can encourage people to pause in moments like the waitress story, to stop and think "how can we both come out of this moment feeling better?" Then maybe, just maybe, the little corner of the world that is reading this blog will get a little brighter. I hope so. As always, thank you for reading, that is meaningful to me in and of itself.

Halfway done beating this thing.