Monday night after chemo, I was ok. The pump was uncomfortable. Of course, my stupid and really severe intestinal cramping started up around 7 pm and lasted all night. I mean like 7/10 writhing in pain cramping, all night. My poor parents were at their wits end. I did feel much better by around 10 o’clock the next day though.
Tuesday was a good day, especially in retrospect. My workout friend and coworker, Carmen, came and hung out with me. She drove me from my parents house to my house and we just camped out, listened to podcasts, talked, read, I tried to get some blog posts done (unsuccessfully). Then my parents came over and we installed a shelf in my kitchen. I’m telling you, my little house is really coming together! I love being over there. It has such a relaxing vibe! It was just a pleasant, low key day, not feeling horrible. I was like “Ok. Chemo. Doable”. I thought about going into crossfit but was worried my intestinal cramping would start up so figured I’d rest more.
We had called my oncologist and discussed my horrible abdominal pain. The prescribed pain medication wasn’t working and my oncologist says sleep is really important. So Tuesday night she suggested we double up and see if that helps. Well doubling up knocked me out for sure! But it also made me wake up feeling super hungover and extra lethargic. Nothing remedies lethargy like getting a chemo pump out! At 2pm my 48 hours were up and I could get it out.
Taking out the pump was simple as disconnecting the line but taking the needle out was a little more painful than I thought. “Take a deep breath” they say and then yank. “If you time the breath right, it doesn’t even hurt.” Uhh ok I’ll work on my timing. Maybe it hurt because it is sore from the surgery still. After the pump came out and I walked back to the car it hit me. They say day 3 is pretty bad and turns out whoever “they” are, they’re right. It was like my energy had been sucked out of me and I felt nauseous and had a headache and had more cramping and abdominal pain. All I wanted to do was lie on my bed.
I scrounged up enough energy for a shower and looked at the incision and port in the mirror. “Ew. How was this my life?” A friend who had been through breast cancer told me she hated her port at first because of what it stood for and meant and she resented it, but over time she loved it for its convenience and all it symbolized that she had already overcome. I liked that. I still hate it but I can see that in time I might grow to respect it.
As the night wore on I kept expecting to perk up, feel better. I had all these aspirations of going to crossfit that night and just being in the box around all my friends. I was pretty disappointed when I felt worse instead of better. I got a little fever even, which just made everything worse.
I refused to double up on pain meds because I didn’t want to feel horrible the next morning again. I woke up about four times with diarrhea and intestinal cramping. Not a bad night. The next day I felt mildly better. My oncologist said my creatinine levels were up. Aka, my kidneys are working too hard, and I needed to start drowning myself and drinking three to four liters of water again. She asked that I come in for IV hydration and to recheck my labs. So my best friend Mary picked me up and waited 2 hours in the waiting room at the oncologist office while I waited for an open chair in the arm chair chemo room and then got dripped one liter of normal saline. I don’t know how that stuff makes you feel better but it does. I didn’t feel good by any means but I had a little more energy.
I was quickly figuring out as the chemo caught up to me, what people meant by “chemo is a full time job”. Chemo isn’t as barbaric and awful as if used to be. By that, I mean that for almost every symptom and side effect there’s a medication to counter it. What gets tricky is monitoring your symptoms and timing it with medications. I had been given two medications for nausea, one causes diarrhea to be taken every 8 hours as needed, the other one causes constipation to be taken every 6 hours as needed. One medication for diarrhea but you can only take 8 pills in a 24 hour period. Then there’s Tylenol and tramadol for pain and cramping. So the nausea, the intestinal cramping, the diarrhea all need to be managed and timed with medications. Don’t have too much diarrhea but don’t get constipated! Manage your pain but be able to stay awake! All the medications make me feel a little groggy and sleepy so I have to take that into account too.
The conclusion I’ve reached after my first week of chemo is I’m bad at drugs. I hate the way they make me feel but I need to stay hydrated and not be in agonizing pain. This chemo thing is going to be tough.
Each day I’ve tried to do a little more, activity wise, testing out my tolerance. Saturday was a good day. And thus, I paid for it Sunday. I woke up ate a breakfast snack (one small pancake), and went to the box for the first time (!!!!). I laid around, cheered on the class, had diarrhea, I even sat on an airdyne for 20 minutes, (pedaling under 100 RPMs most of the time), ended up going 2 miles. But I felt ok, normal intestinal trepidation, normal groggy brain, so naturally I went out to post wod brunch. (We went to a spot I knew had well maintained bathrooms and I was hungry which is a big deal.) Thank God my parents drove because my energy level tanked. I came home and napped for an hour because I could do little else.
I hadn’t driven anywhere in over a week and had plans of going to a friends house but needed a ride, (pain meds and such) but then I realized I hadn’t taken any meds all day and had napped and rested 4 hours so I decided to drive myself. It felt amazing! Driving has always been a stress relief for me anyway. (Even traffic is cathartic cause …Tetris. Duh.) Managed to go to my friends bbq and watch the Dodgers. It’s one of the best things to go to a friend house and be around their family and be treated like family, like you belong. People talk about worrying about being pitied or treated weird, I haven’t worried about it nor have I experienced it to an extent where it mattered. Basically I’m killing it in the friends department. So I lasted two hours and came home to a full on family party.
Family parties probably deserve a post individually. So I’ll just say I loved seeing all my aunts and uncles and cousins and eating good food and it being completely acceptable that I was exhausted. Saturday was a good day.
Sunday I was knocked on my ass, balancing the diarrhea and the meds was way more challenging and took a lot more out of me. Walking around the house was exhausting. I hate naps and naps are becoming the norm. But my brothers and niece were in town and we watched football and sat on couches and it’s a good thing I didn’t have plans cause I would have cancelled them all.
In summation, everyday I’m learning more and feeling better. The plan is workouts and work this week?
I hate that you’re going through this, Amy. But reading your blog reminds me how to pray. I love the view from inside your place! Would love more pics so I can picture where you are, when it’s convenient.
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Family parties are the best; especially with that crew! Amy, Teagan and I are praying with you. We sure miss being in the same town as you and everyone there. Keep proclaiming God’s promises over you!
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Amy, you are truly remarkable! I am in awe of your transparency, vulnerability and honesty. Thank you for sharing and for allowing your friends and family a glimpse into your journey. You have made me cry and laugh through your posts – laughing mostly because I can imagine the look on your face when you are told to do “light walking”. Keeping you in my thoughts and prayers! xo
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I love you even more than I love merging in level 10 freeway traffic (that’s a lot)! Praying for restful nights…
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