Unwritten Rules of Chemo

Well, I’ve officially got 11 rounds of chemo under my belt. I’m basically a professional at it by now. Its meant that each week for the past few have felt like old hat, and has also felt like there wasn’t much to update the blog about. Also, I’ve been working on keeping good sleep habits, so the 2AM blog updates aren’t happening anymore. Sorry.

That said, my “mastery” of chemo seems like as good of a topic as any to give you an update on, so here goes:

What Happens (and how to act) in the infusion room:

Every Tuesday, I go in for chemo. Assuming all goes as planned, its a 2.5 hour process:

• 30 minutes to get my port accessed and get my blood draws processed (making sure my red & white blood cell counts are high enough to withstand more chemo)
• 40 minutes to get all of my pre-chemo meds – 20 min IV bags of anti-nausea (kytril) & anti-histamine (pepcid), followed by 20 min IV bags of steroids (dexamethasone) & more anti-histamine (benadryl)
• 60 minute IV bag of the chemo drug (Paclitaxel)
• 10 mins to flush & de-access my port
• 10 mins or so spread out between each section, because the nurses are busy and not just standing next to you waiting for your IV bag to finish

But before the chemo process starts, comes the most difficult part of the day – picking the chair you want to sit in. At my oncologist, the infusion room (where people get their infusion of chemo drugs) is split into 3 bays, with 6 chairs in each bay. And you get to pick any of the open chairs to sit in for your infusion. The middle chairs in each section are the “TV” chairs, as they face TVs (that you can use with headphones) – so I never pick those, since I bring friends for entertainment. My two favorite chairs are in Bay 1, since they’re closest to the pile of hats that are free for the taking, and are a little bit tucked out of the way, so I don’t feel bad if my entertainment gets a little loud (the problem with live entertainment – no volume button!) but sometimes they’re both taken (ack!) and then I head to Bay 3 hoping that the seat next to the water machine is free.

Once settled (and the IVs are running) the unwritten rules of the infusion room are in full effect (warning: these are just the rules as I’ve witnessed them, and may differ by location)

1. Don’t interact with the other patients – everyone keeps to themselves. I think its weird. But I didn’t create the rules, I’m just documenting them.
2. Unless you’re changing the channel on a TV, then ask the others around you. Literally the only time I’ve seen patients speak to one another is to ask if its ok to change the TV channel. It’s always ok.
3. No stinky food. Chemo patients tummies are generally weird and unhappy. Therefore, nothing stinky

PRO TIP: Bring baked goods to share with the nurses. They will be extra nice to you, and if you’re getting chemo in the afternoon, it will give them a much needed post-lunch pick-me-up!

What to Bring

Each week, I bring my chemo bag that has all the things (and more) that I need for an afternoon at chemo (and most of which I have on hand when I’m not at chemo as well):

In my bag:

•  Toiletries:
  • lotion – chemo dry skin is a thing, lotion helps
  • chapstick – same as above
  • tums – the steroids make my stomach upset, these help!
  • tissues – even with all the anti-histamines, the chemo drugs make my nose run constantly, including in the infusion room
  • essential oils – i’ve got peppermint and lavender on person almost 24/7. best for when encountering stinky smells (sometimes they occur in chemo, even though its against the rules)
• Eye mask – lots of folks take naps during chemo (the Benadryl makes you particularly drowsy) and the lights are on full force at chemo, so this makes napping a little easier
• Snacks:
  • ginger & peppermint candies – great for fighting nausea and keeping my mouth from getting too dry
  • crackers – also good for keeping nausea at bay.
  • protein snacks – nuts, trail mix, hummus & veggies – all good when you get hungry and are stuck to an IV pole for 2.5 hours
• Planner – The oncology scheduler will swing by to schedule future appointments, so you’ll need to have the method you’re using to keep track of your schedule (i’ve gone paper, as its been easier to keep it all straight when i have it physically in front of me)
• Headphones – especially good if you don’t bring live chemo entertainment with you (yay chemo buddies!)
• Good luck charms – everyone has their own superstitions, and I say “it can’t hurt, so why not?!”
• Water bottle – hydration is key! (see: dry skin)

What’s on my Person

• Gem bracelets & necklace & loose stones: as I’ve written about before, I’ve got jewelry with rose quartz, amethyst, citrine and peridot to help keep my chakras balanced and bring good energy forces my way (can’t hurt!), plus I hold a citrine while the chemo IV bag is running.
• Essential oil bracelet: this is an amazing bracelet made of porous stones that you can put drops of essential oils on – keeps the essential oils fresh all day!
• no slip socks – I like to take my shoes off during chemo for comfort, so i use no-slip socks to make sure I’m not slipping around when I head to the restroom with my IV pole in tow
• hat – head with less hair = head with more cold

Now that I’m 11 rounds in, I’ve also found some things that help keep the bulk of chemo symptoms at bay (all advice from medical professionals that also seem to have an impact):

After the fact

• Hydration – I try to drink 250 oz of water daily. More fluids help flush the nasty chemo toxins out of my body. Hence the water bottle at chemo, and the no-slip socks (I pee every 60-90 mins now!)
• Protein – I aim to eat 125 grams of naturally occurring protein daily (meaning no protein supplements or shakes). I’m basically turning into a fish-chicken hybrid
• Gut health – Chemo messes with your microbiome and getting it back in shape is critical to your total overall health – so I’m also working to get naturally occurring probiotics (yogurt, tempeh, miso, sourdough) and prebiotics (legumes, asparagus, onions, oats) in my diet to keep my microbiome (and digestive tract) happy.

Unfortunately chemo is gross. It messes with your whole body, inside and out.

Fortunately, I feel like I’ve got a lot of it figured out – making it much less gross at round 11 than it was at round 1. Plus, I only have five more rounds to go! (Is it 2019 yet?)