A Day in the life of a CLL cancer patient
Hi I’m Tinu, as you may know, my name means love. I believe love is about the actions you take, as much as it is about expressing your love verbally to another or being in a particular state.
My current expression of love to the world, and mission in life, is to share the ups and downs of my cancer journey. It’s different for every one, of course. But one of the things that made the journey easier for me was being able to peer into what for most, is the unknown.
In other words I Googled the shit out of everything.
One of the areas most lacking was what happens between chemo treatments. There’s a lot of technical info about what happens;
- During chemo treatments
- What happens as the surplus/byproducts of the chemo leave your body 48 – 72 hours after, and,
- A shortlist of the side effects you may experience
But there aren’t many day to day personal experiences.
April 18th- A Recent Post- Chemo Day
Woke up at 6:11. Instantly reminded that I have a cold because of my sore throat
6:29. Gotta pee.
6:37. Did I actually pee for a minute straight, then have to sit there for 6 more minutes while additional spiteful spurts came out? Yes. Yes I did.
Lie awake in bed for 10 minutes worrying that I’ll be one of those people who dies from infection instead of cancer since 34% of my lymphocytes are still abnormal.
Will my body make more to fight the infection? Will they be normal or abnormal?
How does this work?
6.47. Text Mom about my cold. After she gets back from the doctor for her own issue, we may have to go in to the doctor if my fever has gone from 99 to 100.5.
7:11. Checked my temp. No more fever. Which is a big deal because a- I had a fever yesterday and the day before and b- probably due to the anemia my temperature is normally up to 1 degree below normal.
7:15. Can’t work up an appetite. I have coffee and naked kale boost mixed with bolthouse strawberry banana to mask the taste.
7:20. Of course I have to pee again. I’m the incredible peeing woman.
It’s now 7:30. I’m very tired but have a report due today. Decide to try & get done by noon and sleep after
It’s 8 am. Time to BM like a Rock Star.
8:15. I have decided to procrastinate working until my normal start time because of sofa king tie red.
(Say it out loud? There ya go.)
8:49. Yes, let’s pee again because of all the reasons. ARE YOU FUCKING SERIOUS I DIDN’T EVEN DRINK ANYTHING.
I asked about visiting the W.C. THIS often & SO MUCH. & they said it was normal for my body to flush extra & maybe scale back my hydration attempts.
8:59. I continue to drink a fuck load of sparkling water because perpetual dry mouth. I love side effects. So. Much.
9:10. Called the doctor to update my status and to make sure none of the meds I want to take are on the unreasonably long list of Things I Can’t Fuck With Until After Chemo.
10:22. Checked my last labs cuz I’m paranoid about getting diabetes since I’m overweight and both my mom and her mom have it. Not even high enough for pre-diabetes. Thanks Unnecessary Fears of Miscellany.
Noonish. Been quietly working. Still haven’t eaten which means I haven’t taken my daily vitamins or prescribed meds.
Waking up at midday is not unheard of so I rationalize that since I didn’t wake up until noon yesterday technically it hasn’t been 24 hours since OW OW OW GATDAMMIT SHOOTING BONE PAIN IN MY RIGHT THIGH.
I want to stab this leg for hurting. Or I could just take a lunch break and eat.
I hate lunch breaks cuz they generally mean I’ll be done working for the day at a later hour. A lunch break means my workday will be 10 -3 overall instead of 5 hours straight ending at 2. But I gotta.
2 minutes later from whatever time it was. BUT FIRST LET’S WASTE TEN MORE MINUTES OF OUR LIFE PEEING LIKE A RUSSIAN RACE HORSE. Which is totally racial.
Why are we singling out Russian race horse volumes of pee? This is a blatant stereotype and we as a people- no as a society — FOR FUCK SAKE AM I STILL PISSING? JESUS TIBERIUS CHRIST ON A CRACKER.
1pm-ish. I make myself a deal – if we can work just until the report is done after my break? We can quit early, catch up on Sunday shows & then nap until 6:30.
It’s 2:19. Which is obviously international whiz palace appreciation time because you guessed it – lots of unreasonable amount of pee.
I get super geeky into my work after playing white noise alpha wave stuff into my headphones and realize that it is 2:45 pm & I’m yet to eat. Text sister that I’ll order in an hour & what does she want, it’ll keep me honest.
Forget to use my grubhub coupon which is the whole reason I ordered from them because brain fog. Which means a longer break is not optional or I’ll never finish a coherent version of this project.
3:20 or thereabouts. Ate. While doing so, looked out the window for 9 minutes before I freaked fully out that I didn’t have any sunscreen on and the window was open. I am Supposed to avoid the sun and use SPF 14 zillion because I’m at risk for secondary cancers. Skin cancer is top of the list.
Calmed down a little after applying sunscreen That protects against both type of sun rays. And prayers.
3:40. Remembering that I’m not scared of death, though not eager for it.
If it’s my time at some point in this adventure I’ll meet my fate with as much grace as I can.
I believe I will transform, that my soul will rejoin Creation, that matter cannot be created or destroyed. That even if I’m wrong there’s a peacefulness to that.
3:49. Recommit to plan A of winning. Fuck a Plan B. Being at peace has its importance. Nah though.
So that was the day. Wait til you get a load of the night….