I had a break between chemos, and it was harder than I expected. After a nearly a year of FOLFOX, I hit my limit.
It’s ironic. I’ve looked great on chemo. I call it the "chemo glow." Targeting fast-growing cells is like a spa treatment, and I’ve been especially careful with shea butter and scalp treatments to avoid dry patches and irritation. I’ve even heard people use fluorouracil as an acne treatment, despite how wildly expensive chemo is. It’s hard to imagine insurance covering that.
Despite this, I brushed off an incidental outbreak of face and chest acne as nothing. Then the next treatment hit hard. My hands and feet itched unbearably, and I was covered in red blotches. I caused a scene in the clinic. All the treatment nurses hovered over me, and the medical team came out to confer with each other, tossing this drug and that at me.
They pulled me off chemo immediately when the blotches came back for the next session.
So, I went nearly five weeks without treatment during the reaction and my oncologist and specialist's search for a new option. The pain never became as bad as before my diagnosis, but I was pretty much bedbound, too weak to do anything, losing weight, and sleeping all day. Trying new treatments is a phobia for me, but at that point, I just wanted chemo back.
I had a feeling my time with FOLFOX was coming to a close anyway, so I’d been praying with friends, asking for God to reassess my treatment. FOLFOX had been effective and tolerable for almost a year, so God would provide again.
My new treatment is FOLFIRI. I heard other CRC patients talk about switching between FOLFOX and FOLFIRI, so I was already a little familiar with it. They said FOLFIRI was easier, but I’m not so sure.
The platinum in FOLFOX's oxaliplatin binds to DNA in a more physical way. It locks up my hands, makes it difficult to walk, slows my comprehension. But FOLFIRI? It attacks the mind. Irinotecan, the “IRI” part of “FOLFIRI,” is more specific, directly disrupting the cellular machinery that manages the DNA in my head and gut. The rush to repair damaged DNA floods my system with neuroinflammation.
This is different from the mind fog. I feel submerged, like everything is heavy and murky. The first day brings an intense paranoia, like something’s hiding around each corner. My perception is warped. After that, I get hit with bizarre mood swings and thoughts of my mom from the chemical storm. Publicly, I think I hold it together, but internally, it’s chaos.
I think FOLFIRINOX, the full cocktail, was the treatment that killed my mom.
FOLFOX is folinic acid, fluorouracil, and oxaliplatin; FOLFIRI is leucovorin calcium, fluorouracil, and irinotecan; and FOLFIRINOX combines oxaliplatin, irinotecan, leucovorin, and fluorouracil--all four. Maybe it's not all at the same time, but I’ve taken all the components. And worse, irinotecan is what I call a “shrouded chemo.” The photosensitive drug arrives with a bit of ceremony, wrapped in a creepy amber veil.
And honestly, it felt good. Chemo works for me. It clears the pain and weakness away.
There's a profound mix of unease, guilt, and victory there. The day after my first FOLFIRI treatment, my irinotecan-addled mind went on for hours about Dymer in group chat--C. S. Lewis's obscure dystopian epic. Maybe that’s what Dymer is about, in a way: taking the chemo that killed your mom.
My relationship with my family has shifted. I’ve stopped talking to Dad, and I no longer reach out to my sister. They’ve been estranged from me since childhood, and after all the time trying to bridge the gap, cancer hasn’t fostered any sympathy. Solomon wrote, “Do not forsake your friend and your father's friend, and do not go to your brother's house in the day of your calamity. Better is a neighbor who is near than a brother who is far away.” (Proverbs 27:10, ESV). That speaks to me, knowing what his own brothers were like. My real family has always been the friends close by, not the biological bonds that are more hostile than supportive.
It’s been a year. I'm the one reaching out to be met with radio silence or cruelty. I have limited energy, and I’d rather spend it with friends instead of draining it all away in forced company. I tried, especially with Dad, to talk about God’s presence in my struggle with cancer. His only response? “God didn’t do that for your mom.” He told me that all the time. It’s a refrain, challenging any assurance I feel.
Sure, Mom was older than me. She didn't watch her health like I did. But despite all that, I was still hit just as hard. I crawl up stairs like she did. I have times my legs give out, too. I'm weak like she was.
I feel like we both got hit hard. But even so, I just don't feel like Mom and I were the same.
She never really had other friends, always clinging to me. Even at the end, when she was crawling up the stairs in her own home, I know Dad was having her run the errands without gratitude. I know she was yelled at in public for being a "frail old woman." I've seen it happen a lot.
Meanwhile, my husband was always been concerned for my health, always caring for me in his gentle way. My friends and my in-laws go above and beyond to support me. Throughout my month in the hospital, I always had people to pray with, check on me, and love me.
Mom had none of that.
My sister spent her only time with Mom yelling at her. Dad refused to bring her even the small things she asked for. In ICU, they ignored her, accepting the nurse's words without question that she was already mentally gone. Dad kept asking the nurses to pull the plug over and over.
God is present in hard times, but I can't shake that she didn't have the same blessings as me. Sure, I've intentionally surrounded myself with people who love me. But it's hard to find decent people. I've been alone for a lot of my life, so I know it's not easy at all.
Mom was always telling me not to worry about Dad and that he'll go to Hell regardless. She always had this quitter's attitude about anything ever getting better. Maybe things could have turned to hope for her, or she could have at least had more friends than just me. But at the end of the day, I'm not really sure how to respond to Dad.
"God didn't do that for Mom."
Solomon wrote, “Death and life are in the power of the tongue, and those who love it will eat its fruits” (Proverbs 18:21, ESV). God gives you light and hope, but you can't surround yourself with poisonous words. I believe it's a mortal danger. I think it hurt Mom.
At least I feel at peace in one thing: I tried to be a dutiful daughter for her, whether or not it was enough. But the closed door between Dad and me remains, and every conversation is punctuated by his belief that God’s favor is fickle. I’ve come to accept that it's not really my job to force anything. I’ll keep moving forward, praying, supported by those who truly care.
For general updates, I feel bad missing personal deadlines on my blog. I got really sick during my break in treatment.
My cancer spread to my lungs in the meantime.
But my blood counts have been good. Even if FOLFIRI's messing with my head, my blood's tolerating it well so far. It just makes me really, really tired.
I went to a Hatsune Miku holographic concert. :) That was a dream since high school. I'm disabled, so they gave me a privileged spot up against the stage. I'm so happy whenever I think about it. I am so lucky.
It's my birthday month. My birthday falls directly on Thanksgiving this year...so give thanks. :)