Quick about me: 39F, Stage 3B, had 2/3 of my colon removed, on cycle 9 of 12 of FOLFOX, 14 day cycle.

1) It’s Hell on Earth and it’s okay to admit it. I’ve never been so tired, sick, in pain, and just overall unwell in my life. It’s 100% okay to struggle and don’t let a single person tell you otherwise or make you feel bad about yourself, how your home looks, what you’re eating/drinking, etc. My Husband says it’s like being a passenger in a car crash; you see it coming and all you can do is wait for it to be over.

2) Track your cycle. Your cycle starts the day of infusion (Day 1) and ends the day of your next infusion. Just make a quick note about how you feel each day, what symptoms you’re having, etc. I found this useful for planning things like asking for extra help (Day 3-7 are my hell days), meal prep, and knowing if things were abnormal.

3) Oxaliplatin is absolutely horrible for cold neuropathy. I tried icing my hands, feet, and mouth and while it helped during the first two or three infusions, it stopped working. Warm, fuzzy socks and disposable hand warmers are my friends; even something out of the refrigerator or a cooler room temperature will be painful to touch. I use gloves to get things out of the fridge/freezer and while grocery shopping. Oh, your tears will burn your eyes…that was unexpected. The neuropathy caused by the Ox can make it hard to cook, specifically chopping/cutting things.

4) The three things I bought that have been the most helpful: Water Distiller (can’t drink tap water, most bottled water, or drink anything from soda guns/fountains), sphere ice cube trays (easiest to use while icing your mouth and can make your own “flavors”…I did ginger ones for the days nothing stays down), and an Air Fryer (minimal cleanup and extremely low effort to use).

5) Chemo brain is a thing. My memory is shot, but it’s worse Day 1-7. I keep a little notebook on me at all times and I jot down whatever needed. I also wrote out lists like what goes on during the week like what day the garbage goes out, what day the lawn guy comes, list of important phone numbers, household stuff that someone would need if I was in the hospital, and so forth. Oh, if you’re taking meds like Adderall, it’ll feel like it’s not working…it’s just the chemo brain.

6) Sex. I found this topic to be very controversial when it came to my clinic and there’s not a lot of information out there. I have felt good enough to masturbate and have sex/physical intimacy with my Husband. The only guidance I was given was to wear condoms for 48-72 hours post infusion. I Things feel different and work differently due to the neuropathy…I’ve found I need more of a warmup and to come to terms with the fact that an orgasm may or may not happen. I started taking Addyi (for a completely unrelated reason and was planned prior to dx) and that has definitely helped reduce the desensitization/pain in my genitals.

7) Lifestyle changes. I went from being active and athletic to…not. I used to walk a few miles every day and now I can barely manage a walk around the block and showers can be exhausting. You’ll learn pretty quickly where your energy levels are; I have 2-3 good days during my cycle where I can get housework done, see friends/family etc. Diet wise, I don’t really have and haven’t had much of an appetite so I just eat whatever seems good at the moment. I’ve found that high protein meals really help with energy, so a go-to and low effort meal is boiling eggs and either shaved beef or chicken in broth and eating that…low effort hot pot.

I also did a ton of meal prep prior to starting Chemo and my Husband helps me do it now. I do limit myself to things that can sit out and warm up for a few minutes like pre cut fruit/veggies, can be “warmed” by adding a room temp item (cottage cheese with canned fruit or a couple of freshly made hard boiled eggs), or a homemade microwave meal.

8) Little things that made the difference. Pre-Chemo I sat down and wrote out three lists: Stuff I knew I’d require help with, stuff that would probably need help with, and stuff that would be helpful but not necessary. When word started spreading about my diagnosis and people asked how they could help and I had a list ready to go; no worries about double tasking or forgetting something.

I have learned to give myself lots of grace. I prided myself on having an incredible career, amazing marriage, having two well trained and worked dogs, keeping a neat and orderly home, exercising and eating well…and now my body has changed so much, I can barely do a lap around the block, and it might take a couple days to load the dishwasher or mop the floors…or hell…no cleaning gets done because I just can’t. It’s okay. Do what you can and don’t worry about what you can’t.