#folfox

I'll be the first to admit that I love all things organizational, but it is intimidating to have a 3-ring binder just waiting for you when you walk in the room.

Fortunately, our NP Ashley knew exactly how to break the information down into digestible chunks.

First:

My chemo regimen has the secret-mission worthy nickname of FOLFOX.

FOL = Leucovorin; Folinic Acid

F = 5-FU or fluorouracil

OX = Oxaliplatin

The folinic acid is to help with the absorption of the chemotherapy drugs, 5-FU (you know you laughed) and Oxaliplatin.

Second:

Each FOLFOX treatment is repeated every 14 days, making one cycle.

My cycle will look like this:

Day 1: Wednesday

Report to Dublin Cancer Center for check in, blood work, chemotherapy via infusion.

Go home with a pump containing 5-FU attached to my port, to be returned on Day 3/Friday

Day 2: Thursday

Pump continues to administer 5-FU

Fun fact: the body metabolizes 5-FU almost as soon as it is introduced. During the infusion, folinic acid is given to help slow the body's metabolism of 5-FU to help it be more effective.

At least I think that is what Ashley told us; I will edit if I have that wrong. There was a lot in that binder!

Day 3: Friday

Go to Dublin Cancer Center to have pump removed.

Day 4 - 14

No treatment

Days 3-6 tend to have the most severe side effects

There is a whole list of those, and we will discuss them later.

Third:

We toured the treatment area. Considering how much time I am slated to be in my assigned bay, it was uplifting to see how pleasant the space is. We were advised to expect visits to last 4-4.5 hours, which seems like a long time, until you see how it gets broken down.

Having the port means I don't have to do IV's, so that is a huge bonus in my book. The area is kept cool, but there is an unlimited supply of warmed blankets, which might be the best selling point I've heard of anything ever.

JR is welcome to be with me, but even if he can't stay the whole time, (or if I kick him out to catch up on my shows) his office isn't very far away. I was encouraged to bring any kind of electronic I liked, as well as books/etc.

Do you think I can sneak my cricut in?

Maybe I'll save that for the second or third round.....

Fourth:

We walked out of our orientation on Friday feeling so much better about everything. There is no doubt that this is overwhelming, but we have such wonderful people guiding and helping us through, that it makes it less scary than it was.

Also, a consistent schedule means I can make a spreadsheet, and anyone who has ever met me knows that is a good thing. (Mom, expect your copy soon!)

Fifth:

For the current list of dates/chemo cycles, you can check here.

Thanks for checking in!

Sure enough, a few minutes into the oxali drip, I sat up in my chair with shooting pain up and down my back. I probably looked like I was having a seizure as my body convulsed every second to the pain and I couldn’t keep my head up. The nurses ran in, took out my oxali line, pushed anti-nausea meds and more Benadryl and called for an NP. I started dry heaving and went into rigors. I was shaking and dripping sweat and my throat felt fuzzy and foreign, like it wasn’t a part of my body. However, I could breath in and out of my nose and I knew that if I remained calm and focused on my breathing, the meds would kick in in a few minutes and things would be fine. They had an epipen and push of pain meds ready to rock but I asked them to wait because I felt so fucked up from the Benadryl, I couldn’t imagine putting more medicine in me. Sure enough, a few minutes later, sweet relief. I couldn’t really talk and had no motor functions at that point so the nurses let me sleep if off. They woke me up an hour later and I said I was ready to get the fuck home. They were so freaking sweet, even offered to run across the street to Starbucks so I didn’t fall asleep in the Uber home but I felt confident I could get home fine. I did, and spent the rest of the day in bed, loopy as all get out, trying to take in everything that had just happened to me.

As FOLFOX is still such a good chemo, they want to try again, but this time, give me the drip over 8+ hours so see if only little bits at a time will prevent another allergic reaction. 

My last round was exponentially worse due to my hemoglobin levels being so low. I had to add an iron drip to my treatment. If you’ve never seen an iron drip, it’s blood red and looks pretty creepy. Apparently it can really magnify your side effects, as it makes you nauseous, fatigued, etc. I really struggled this round physically and mentally and spent a couple days in deep pity party mode, sobbing off and on, and in general feeling so sad about my life. As hard as these days are on me, and they are, I sincerely hate them, they’re very necessary and help me shed a lot of emotional weight. By day 5 I was feeling much lighter and although I didn’t have the energy for much, my neighbor and I went out for coffee on our block. He’s been the best, helping me with groceries, deliveries, etc. he’s become one of my favorite people.

I normally prefer to grieve on my own but something about this scan pushed me to reach out to Anna who lives nearby. We both had to run a few errands so we decided to meet by the City Point mall. As I was waiting in line to return, I saw her walk into the store and promptly walk out. My confusion only lasted a second as my phone started vibrating. She had just received a text from a friend she spent the weekend with saying she was directly exposed to COVID. Obviously no ones fault at all, but it was a punch to the gut. The one time I reach out because I really needed some in person support and this shit happens. When I left the store 5 minutes later, Anna was standing there. I started crying and she started crying and I put my hand over my face and we stayed like that for a minute. Then I felt a tap against my sneaker and I looked down to see Anna’s shoe on mine. What a pathetic scene, 2 girls leaning against the store window, standing 6 feet apart, crying, with legs stretched out so our shoes could touch. At least this got us laughing.

I got in an Uber home and Melanie called saying Anna had just explained to her what happened and she was coming from Philly. I said “don’t be silly, you don’t need to drive up here, I’m ok” but Mel basically told me to fuck off.

Friends are the best.