2 weeks Post-Op

And keeping busy!

Sep 12, 2024

I’ve had some folks reach out wondering how I’ve been doing so I thought I’d write a little post with some updates. My surgery at the NIH was 2 weeks ago now, and while I’d love to say that I’m already back to my ‘normal’ self, my body is still recovering. In technical terms, I had a laparoscopic partial hepatectomy…or in more simpler terms, I had a small wedge of my liver removed. This wedge contained a cancerous lesion where they are hoping to harvest the TIL cells from. This procedure has left me as the proud owner of 6 new dime-sized scars along my abdomen.

I’m not quite sure why, maybe because of my stubbornness, but I thought that this surgery would be no big deal. I have been healing fine, but it’s been a touch more painful and uncomfortable than I expected. Not only are there the physical scars and some breakthrough bleeding when they rub against my clothes or beltline, but there’s this internal tugging that feels so weird and is hard to describe. Like when I try to lay on my side, my liver feels heavy or that it could flip onto its side. Is this even possible? And sometimes, this makes it hard to take deep breaths. Now, I am in fact healing just fine and I know that I just have to be patient. I was instructed to not lift anything heavier than a milk jug for 6 weeks and I’m taking that recommendation to heart. The concern is me developing a hernia which I definitely don’t want. I can already feel a lot of scar tissue building up from all of the abdominal procedures I’ve already had and I don’t want to do anything dumb to add to this.

So now we wait. Ideally my little TIL cells are starting to grow and multiply into large quantities. We should have an inkling of how these are doing in about 6 weeks though the full growth period will take 3-4 months. For now, let’s send them lots of love and so that they can grow to be big strong TFBA’s (total f*cking bad asses)!

Oh and let me give a shout out to the staff at the NIH! Everyone from the security guards at the gates to the nurses, doctors and technicians were all so incredibly friendly, kind and compassionate. It was truly a pleasant experience to be a patient there and I really felt I was in good hands.

Fun facts from this trip to the NIH:

-It was the first time I’ve ever had to use a bedpan. Can I tell you how awkward it is to pee laying down?

-It was the first time I’ve had a body part signed with a sharpie...at least that I can remember. My doc had to initial over my liver…even though I only have one. LOL.

-It was the first time I had to wear this butt pad thing. It’s something that’s put on before surgery so that you can avoid bedsores. Let’s just say it was weird to stick my butt in a nurse’s face to have her place this on me.

Now onto something a bit more exciting than butts and surgery…

Two days after I got home from the NIH, I was back on a plane en route to Tuscon, Arizona to attend an End of Life Doula Training! It was presented by Alua Arthur and her team at Going with Grace and it was such a special and impactful 5 days of training. I wasn’t sure if the surgery was going to prevent me from attending, and I’m so glad I was able to make everything work out. Yes, I was sore from the surgery and had to promise to check my bag at the airport (btw this was so freeing!) but I made it!

It might not be surprising but when I was given a terminal diagnosis and told I had 6 months or less to live, I started to think about my mortality and what I’d want my end of life to look like. This is how I came across Going with Grace last year shortly after my diagnosis. I started researching options and realized that death doesn’t have to be something to fear. I mean, we are all going to die. FACT. Why not approach it with an open mind and do our best to craft it the way we would want it. And if we actually start to plan for it now, how much less stressful would this be for our loved ones when our time comes?

Clearly this sparked an interest in me in becoming a Death Doula and is why I wanted to attend the training. The application itself was intense and required some deep reflections on the way I currently live my life and what my impending death might look like. I was thrilled when I was accepted on a scholarship basis. I also started to consume many books on death and dying and I started to volunteer at my local hospice. I would love to help destigmatize the conversation around death and to actually help people become more comfortable with the idea of their own mortality. There’s still a lot of work that I have to do to fully prepare to jump into this new endeavor however I’m putting this out there into the world now. Stay tuned for more details in future posts and if you ever want to talk about death and dying, I’m your person!

Oh I feel like I should also mention that I returned to chemo this week. After 2 glorious months off and pretending like I didn’t have cancer, I’ve returned to my every 2 week infusion schedule. With that, comes the days of nausea and feeling like crap. I just got disconnected yesterday and thankfully the nausea symptoms are already improving.

And finally, as if I wasn’t already exhausted, Chris and I are currently in Brooklyn, NY for a long weekend. He’s leading a half day Mindfulness Retreat at our old gym and there are still spots available if anyone is interested. We’ll also get to see some friends, eat some good food, go to a concert at Forest Hills Stadium and ideally make it out to Rockaway Beach for a little beach time. If you’re around and want to meet up for coffee/lunch/snack, let me know and I’ll do my best to make it happen!

Phew, that’s enough for now. Though I will mention that I have one more trip next weekend to see my Fight CRC family in Kansas City…and then I’m done traveling for the foreseeable future! Until at least, it’s time to return to the NIH. ;)

Thanks as always for being here, for reading until the end and for your love and support.

with love and gratitude,

Jess