Act II: “Vacation” is Over

The Return to Chemo

If you’re reading this in real time, tomorrow is not only the 4th of July holiday here in the US, but more importantly, it marks my Grandson’s one month birthday and it puts me 4 weeks beyond my surgery. I like to think the fireworks are to celebrate those latter two. 😉

Overall, my healing has been going very well. I’ve had zero pain for a couple of weeks now and the swelling is gone. There’s still a bit of tenderness around the incisions but really only if I push against them. This reminds me of when I was a kid and I’d run up to my uncle (who is my surrogate dad) and say “it hurts when I do this”. His wise response was “Well, don’t do that”. Will I ever learn??? The smaller robotic incision sites are all healed over, the glue has fallen (aka been picked) off and the few stitches that I had are out. Don’t tell my husband but I may have used tweezers and scissors to pull them out myself. What? I couldn’t help it! They were itchy and would stick to my shirts so they had to go. Also, I’ve still been binging on Grey’s Anatomy so I’m pretty sure I’m basically a surgeon now.

Ok, all jokes aside, the only wound that isn’t fully healed is the ostomy site formerly known as Karen. However, what once used to be a 2x2x2cm hole (roughly the size of a half dollar), is now down to about the size of a pencil eraser, with minimal depth. I realize we were told that this would heal from the inside out and it’s been absolutely crazy to see this play out. I’m now healed enough that I don’t need to ‘pack’ it anymore and I can just use a small bandage over it. I still haven't laid on my stomach but I feel like I no longer need to avoid that. Hooray for not seeing my insides anymore!

Considering I’m pretty much healed, I met with my medical oncologist last week to discuss next steps. While I’ve recovered well from surgery, the neuropathy in my hands and feet has gotten progressively worse. Thankfully it’s not painful, but I do have this tingling, numbing sensation present in my extremities 24/7, with a side of zaps shooting up my arms and legs at any given time. It’s such a hard thing to describe. Imagine that your feet have been submerged in cold water for so long that they pruned. When you finally pull them out, they’re cold and kinda numb and you gently try to tap them to get the blood flowing and heat them up to get them back to normal. Well, I’m stuck in that state. Unfortunately, this is affecting my gait, my balance and stability, my grip and my dexterity. I can still do everything I need to but things like writing, typing, walking down stairs, putting on earrings and opening a jar are much more challenging.

To be honest, I was really surprised to have the neuropathy get worse over this past month especially considering I haven’t had chemo in over 6 weeks. We knew going in that neuropathy was a side effect of one of my chemo drugs (Oxaliplatin) but we weren't aware that it could have delayed effects. This makes me glad that we took a break from chemo when we did because I’m not sure how much worse it would have gotten if we continued. And there is a point of no return with neuropathy where it can become irreversible. Ideally though, we didn’t go that far and I’ll be able to regain normal function and feeling in my hands and feet with time.

Based on the above, it was pretty clear that my chemo cocktail needed to change. I had been on FOLFOX which consisted of 3 drugs: Fluorouracil (5-FU), Leucovorin (technically a vitamin) and Oxaliplatin. My oncologist laid out a few options for me to consider moving forward:

• Maintenance treatment: 5-FU and Leucovorin only. This would be short term, maybe just through the summer. We could see if it continues to be effective solo, with minimal side effects.

• Aggressive treatment: FOLFIRI. This includes 5-FU, Leucovorin and a new-to-me drug called Irinotecan. Goal here would be to continue to aggressively attack the lesions in the liver...which could open the door to more liver-directed therapies in the future, provided that the lesions continue to reduce in size. Downside is more hair loss, diarrhea and fatigue.

• Avastin: This is an option once I'm fully healed from surgery. It is a targeted therapy that can enhance the effectiveness of chemotherapy by increasing drug delivery to the tumors and reducing the development of drug resistance.

It’s probably not a surprise to know that I’ve chosen the Aggressive route and by the time you read this, I will have just finished my first chemo infusion post surgery (11th overall). While I was tempted to keep my chemo-free ‘vacation’ going, (I would guess that not many people recovering from major abdominal surgery would consider that a vacation but it was for me in a way!) I’d be lying if I didn’t mention that all the time that I’ve already spent off of chemo makes me nervous that I’m backsliding. There is currently zero evidence to prove this but it’s still a thought that is taking up space in my mind. So, partly because of that, but mostly because I feel strong and healthy, I’m ready to take on this second stage in my treatment. 

Mentally I’ve prepared for returning to infusions every 2 weeks, to being attached to the pump for 46 straight hours and to the potential new side effects. I’m even planning to cut my hair short in anticipation of the hair loss. For me, I think this would minimize the emotional impact of losing clumps of hair in the shower. And it gives me the opportunity to sport a super short haircut for the first time! Ok, honestly as a long hair lifer, I’m a bit scared but I also know that it will grow back. 🤞

All of this is just part of the Hero’s journey, right? It wouldn’t be a good story without new, uncomfortable and seemingly impossible challenges to face. Sure, I often wish this was a show where I’m not playing the lead, but I’m so grateful that I’ve got the best supporting actor by my side, and that I’ve got you all rooting for me along the way. Let Act II begin!

In love and gratitude,

Jess