Operation Mass in the Ass: Chemo #1 in These Foolish Things

Yes, the Mass is OUT, but this is now the fight to keep that jackass from returning anywhere in my bod.

I thought about writing an entry yesterday while sitting in the chemo chair for hours, but I opted to pay attention to the scenery (sat by a window, thank goodness), listen to the nurse while alternately listening to soothing music, and actually make some friends sitting nearby (two old guys with Stage IV colon cancer who were super strong-willed and bucking the odds for sure).

[Athena] went with me to chemo class last Friday and like I said, I was so happy she did, but man, the vibes sure were off that day. I tried to put my determined hat on, but to be honest, going to that class not only made my head spin but filled me full of dread. And everyone in the waiting room and infusion room during the tour looked so…I don’t know. The vibes were just not that good that day.

Yesterday’s visit couldn’t have been more opposite. Happened to run into my HOT Oncologist in the hallway and he remembered me and asked me how I was doing. I told him it was my first infusion and he wanted to look at my port incision and he told me that he’d get with the nurses to put the lidocaine numbing cream on the port. Already a good interaction because the NP told me that I wouldn’t be able to do that during first infusion bc the incision was too raw. Interesting to note how many different opinions abound during chemo. Clearly, it’s a fine art of monitoring reactions and adjusting, but it seems that nearly anything should be able to go as it comes to how different patients are. I think next time I’ll even try some cryotherapy things for my hands and feet that I’d read about online.

I LOVED my infusion nurse - she was beyond kind, patient and informative. She worked methodically and double checked things for me and was just so damned incredible. I know it takes a certain kind of person to do this job, and she is truly a gem. I believe she’ll be my nurse for my ongoing infusions. At least I hope she will be - I still don’t know how it works exactly with the nurses and their stations. There was an Asian man sitting across from me when I first got there and he didn’t speak much English, but after they were done he said simply, “Your kindness…very nice.” And made a thank you gesture. And that was the perfect thing to say because it’s absolutely true.

I hope to sit by a window every time, but know that I may not always have that option. It felt much like sitting in business/first class on an airplane (the chairs are similar - also heated (!) - and there’s a desktop you can pull around to work on your laptop or have a meal or whatever you want to do. I was texting with [Athena] telling her that I’m going to look at this journey like a long, extended trip to China - those trips were grueling and I always had some kind of jet lag or was feeling hungover and just blah most of the time I’d go there, but there were also always moments of amazing discovery and sometimes beauty beyond belief. And even new relationships.

It’s going to be a grueling trip, but it’s necessary and it will be done.

Here’s how the infusions go:

The first infusions are steroids and anti-nausea. Thank goodness. I still have energy and I have not been nauseas at all just yet. In fact, my dad picked me up and we were able to go for a lovely walk and eat a delicious meal outside on a patio. I had a salad topped with salmon and it was the best thing I’ve eaten in weeks. They say your tastebuds will change and you’ll lose your appetite, but none of that has kicked in yet - I was starving and it tasted wonderful.

The next infusion is the one with all of the weird side-effects like neuropathy and sensitivity to cold. I’ve already experienced some of that with tingling in my fingers and most weirdly of all, the feeling of glass shards in the back of my throat when I drink something. I’ve also already experienced something called the “first bite” phenomenon - where the first bite of food makes your jaw go crazy - very similar to the sensation when you put something REALLY sour in your mouth. Like, dill pickle juice sometimes does that to me.

There was another infusion of something else, but I can’t remember what that is because they administer it at the same time and I guess doesn’t do all the weird stuff.

And then the last and final infusion of this particular chemo is something called “5FU”. Appropriate? You bet.

The 5FU is a portable infusion that I take over the next 48-hours. In other words, I tote this little fucker around for two days. It’s a small-ish ball attached to the infusion tubing that goes into my chest port. They gave me the ugliest fanny pack in the world to carry with me, so when I got home I quickly changed my bag to a cuter crossbody bag and I also spoiled myself last night by ordering the cutest little vintage Louis Vuitton crossbody bag on The Real Real (similar to this one). I mean, I rarely splurge like this, but I figure now is a good time to make myself feel ok. I will probably buy another different kind of bag so I can have some variety, but it’s just nice to have something special if I’m going to have to go through this.

Dad picked me up after I was released into the wild with this chemo ball (which I’ve named “Foxy” because of the name of the treatment: FOLFOX) and we were on our way to pick up Martini at daycare.

I felt a little weird, I guess. I felt a bit of neuropathy that came and went but not bad. I actually felt good, I guess? I know that this good feeling is fleeting, so I’m enjoying it. Dad and I had a wonderful walk and dinner like I said above, and went home and kind of just wound down watching episodes of Shark Tank and I looked at my phone, shopping for bags until I was tired and ready for bed by around 8:45.

Took a melatonin and fell asleep (with Foxy still connected to me and sitting on the bedside table) easily until about 1:45am when I woke up and looked at Foxy and was freaking out that she might not be infusing me! She looked full as a tick and my mind spun knowing I was going to have to go back to the hospital today and get it checked out. UGH. Took another melatonin to get back to sleep. And when I woke up, I could definitely see a change in Foxy’s appearance. She’s working. She’s infusing. She’s got this.

So here I am at the office trying to catch up with everything. I’m so happy that I feel well enough to come here and just about ready to take Martini on her lunchtime walk. Today feels good, even though I’m still a bit groggy from the cocktail of melatonin and chemo.

Tomorrow is disconnect day (DISCO DAY!) when they unhook Foxy and send me on my merry way. I understand that that’s when the fun begins - I will need to start the nausea meds and will prob feel funky. I don’t yet know what to expect, but the only thing I have scheduled is a vet appointment for Martini at noon on Saturday. I plan to not be barfy and just roll.

That’s all I can plan for. Just roll and get through this trip.

Thank you for joining me. I love this place where I can write about it when I can and I love you,
GS

Last updated March 25, 2021