Chemo’s Like This…

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This is my port when it’s all hooked up. Good times.

Chemo. Chemo chemo chemo. What to say about chemo? In some ways, what I want to say about chemo is f*#k you people for not being able to do better. This is awful. It makes me feel crummy and I think there has to be a less cruel way. However, if wishes were horses, beggars would ride (to quote the old proverb). So chemo, specifically intravenous chemo. Thank you intravenous chemo for knocking out whatever little microscopic cells might have migrated to my liver and lungs thereby wreaking havoc in the future. Thank you and f*#k you.

As far as I’m concerned, intravenous (IV) chemotherapy goes something like this: they stick a port in your chest with a line leading into your jugular vein. A port is a small disc of plastic or metal that sits under your skin and has the shape of a tiny eclair. Kind of. My friend Gail called it her alien. Maybe it looks like a large mass. Whatever. It’s there and when you come into infusion clinic they can draw blood through it OR administer meds, on infusion days they do both.

I do a 3 day infusion every other week. On Monday, the clinic administers the bonus fluids and first drug in clinic, then I leave connected to a portable pump that will administer a second chemo drug for 48 hours. I go back on Wednesday and they disconnect me. When I go in to clinic on Monday, they connect the IV to the port first, which is the picture above, and take blood. Then the nurse starts the drips. Plural. I get dextrose, then a big bag of fluids, a steroid, 2 anti-nausea meds, saline, and oxaliplatin (the chemo). All of this, plus a quick doctor visit, last about 6 hours. Midway through I start to feel a little nauseated with a metallic taste in my mouth that is always kind of there making wine taste like vinegar (sob). The 3 days of active chemotherapy affect my tastebuds the most. Before the end of the infusion I have developed a cold sensitivity that will last for 5 days following my disconnect on Wednesday. I cannot drink, touch, or feel cold. Take that back, I am able to touch cold things, but it’s incredibly unpleasant. Swallowing cold things is akin to swallowing crushed glass, and if I wash my hands in cold water, touch a chilled metallic surface/handle, or grab a cold anything out of the refrigerator, it feels like what I imagine frostbite feels like, sharp, burning, and wrong. If a cold blast hits me in the face, it’s like being pierced by a million tiny needles. I wear gloves and socks most of the time, even inside.

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Ralphie’s brother, Randy, from “A Christmas Story,” modeling Oxaliplatin/5-fu chemo week fashions for Winter 2015/2016. I look like this when I leave the house, and turn the heat up when inside my home to tropical temps. Everything’s nice and irie up in here.

By the time I’m leaving the clinic, I’ve developed a severe sensitivity to releasing saliva during the first 3-5 “chews” of anything. It hurts and I make faces, then it goes away. I know some real vain kings and queens who would pay for a weight loss regimen this effective. No joke. Next up comes the paralysis that comes and goes to the left side of my mouth. It’s bizarre and is probably reminiscent of the way people feel when they have a stroke. Occasionally, I experience dysphagia. What’s dysphagia, you ask?  It’s difficulty swallowing due to nerve endings in my throat being affected by the chemo. Dysphagia is alarming because it feels like you’re choking and can’t get food out of your throat, up or down. As a brilliant home health PT, I know a trick. Lower your chin, chew a ton, then slightly lift your chin to help the food go down. Best. Diet. Ever.

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First day. I look a little shell-shocked. Haha! Was it the getting up early or having my port tapped the first time? Mystery.

Continuing on, somewhere in this 5 day period, I begin developing muscle spasms in my diaphragm and intercostal muscles. Mostly they are slow waves that lightly ripple through my left rib cage, but, the big BUT, there will be one or two that will bring me to my knees. Spasms of a magnificent intensity that halt me in my tracks for 20-30 long, tense seconds. I breathe in and out until they go away. Then I go on doing whatever, because they go away and I’m really happy about that. I’m also developing neuropathy in my fingers and toes. Neuropathy is when nerve endings are damaged, causing numbness, tingling, and pain, and is another side effect  exasperated by cold temps. I also have memory loss and a horrible time with word finding. For those of you who know me, zip it! This is definitely because of the chemo.

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The chairs are comfy and the blankets are warm. Trying to look productive. Pfffft.

By Wednesday and Thursday, I will feel as though someone drained my battery to a little less than 50%. Everything becomes an effort. Getting up to walk to the bathroom, climbing the stairs up or down to my second story, leaving the house, making the bed, brushing my teeth. EFFORT. However, I will do Pilates twice this week and walk everyday. Friends will come over, I will clean a couple of drawers and continue to slowly organize my life. I will read, I will write, and I will be present. When I feel especially poorly, I will watch television with a dedication that will horrify most and impress a few.

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Me, doing Pilates, the day after infusion clinic while still connected to my pump. What’s your excuse? Thank you, Pizzanista! (www.pizzanista.com) and Pi Movement (pimovement.ninja) for the workout gear.

I might binge watch television because the entire time, along with all these other side effects of chemotherapy, I will be fending off debilitating nausea. Nausea is prohibitive. If I’m nauseated I’m not moving or talking, returning text, opening the door, or getting off the couch. Life slows to a crawl, and the numbing waves of woe begin to set in. I have ways around nausea that don’t involve my anti-nausea meds. Anti-nausea meds suck. So, when the nausea is controlled, I can easily deal with all these other side effects.

My advice from Brokenrecordville? Control your nausea, whatever you do, figure it out. Drink lots and lots and lots of water! Flush your system, help the meds, be proactive in the process! Walk. Even if it’s just around the block, around your house, or around the kitchen island 10 times. I am begging you to move your body. This is counterintuitive but astoundingly helpful. Pump those meds through your system by stimulating the lymphatic system, and maintain some endurance and strength while you’re at it. Why not? It can’t hurt anything, although per usual, please consult with your medical oncologist before beginning an exercise program.

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Santa came to visit. He really was a jolly man with candy and a real beard. Kids, don’t take candy from strangers, adults with cancer, why not? You’re already ingesting shocking amounts of poisonous substances. Live it up!

Being around people I love and enjoy is huge for me, and that is generally the case in all aspects of my life. Do whatever sparks joy in you. If it’s reading a good book, painting, going to movies, sitting in parks, please partake. Make sure you do those things. Maintain the beauty in life, because this is a tricky road to navigate. These good people also understand when I don’t leave the house for days on end and stare somewhat blankly at them through conversations. Muy importante. The mass majority of my symptoms will resolve. The neuropathy will go away, the fatigue will dissipate, and my memory remains a mystery, but in the meantime, this is the way I roll every other Monday through Wednesday, with 5 amazing days out of every 14 when I feel mostly spectacular. Woot woot!

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Reading an article on hipster chocolate fraud in Brooklyn. Apparently even their beards were false! Whaaaaaattttt? And that’s the only article I ready in the NYT today, but they nailed it!

My companions so far:

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The lovely Julianna who has taken me to chemo twice and is cheery and dedicated and so loving! She is often mistaken for my daughter (wish you could see my hair flip, nod and once again, pat pat on the back), and is happy to loan me her fiancee when she’s unavailable. I love her.

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Sweet Amanda brought me and we had tacos Favored to the clinic. Laughter seems to be the common thread of my infusion days. AND she taught me to knit to help with the neuropathy. My scarf might not be beautiful, but it’s awfully pretty with all the love.

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Beautiful Barbara brought me for Christmas Chemo! We had pain au chocolat and coffee for breakfast, Indian for lunch and laughed our way through an extra long day of chemo. We set intentions for the Winter Solstice and celebrated B’s birthday at Justine’s later that evening. Such a good day!

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Of course my parents have taken me for all disconnects and for 1 chemo. They are incredibly patient with how loopy I am by Wednesday and don’t make too much fun of me. Thank you! Thank you! Thank you for a million kindnesses and a lot of understanding.

2 thoughts on “Chemo’s Like This…

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