As I mentioned yesterday, today is the first of five daily posts about my life with MBC. This was harder than I thought it would be. I don’t think I’ve kept a proper diary since 6th grade.
Monday, October 28, 2019
3:00 am – I had to go back on steroids this past week to try and treat some pain symptoms that aren’t going away. Which means that 3:00 am is my wake up and pee time, if I like it or not.
4:00 am – Fall back asleep.
6:30 am– Wake up for real when Tim gets up to peel the Lidocaine patches off my back and shoulders (I can’t reach them, and they can’t stay on more than 12 hours at a time).
7:30 am – I eat a piece of toast so I can settle my stomach. Then I take 10 pills of various shapes and sizes to control all of the side effects I get from my cancer treatments. Finally, I get dressed and ready for the day so we can leave at 9:30 am.
10:00 am – Arrive at Shoreline Middlesex Hospital and get my blood drawn in the lab. My veins never want to cooperate, which is why I have a port implanted into my chest for easy access for blood samples and treatment and infusions. But for some reason, not all oncology nurses or medical techs know how to access a port. This is an issue that I could rage about for a good ten paragraphs or so, but I won’t put you through that today.
10:15 am – Tim and I go to the second floor to Connecticut Oncology to see Dr. K. He has been my primary oncologist since 2015. He’s very thorough and accessible to his patients.
10:30 am– We run through the results of my last MRI to check my cervical spine, but Dr. K wants to consult on it with my Yale docs this week. He saw something in the cerebellum, but he needs earlier MRI films of mine to compare it to. Another annoyance; why didn’t Yale send the films automatically to Dr. K as requested by me, several times? Anyway, the steroids he re-prescribed last week have taken my pain levels down, so I’m going to continue on those for ten days.
11:00 am – Visit the infusion room in the oncology office, Mary the oncology nurse greets us and I take an open chair. She’s the only nurse on duty today, which is not usual so I wait a little bit. Only two other patients getting treatment when we arrive.
11:15 am– Mary accesses my port and hooks it up to saline for hydration.
11:30 am – When it’s prepared, she hooks up a bag of Zometa, which is given to me every three months to strengthen my bones.
11:45 am – Get hooked up to Perjeta, an autoimmune therapy, which drips for 30 minutes.
12:00 pm– Get hooked up to Herceptin, another autoimmune therapy, which goes for longer than the Perjeta (90 minutes).
1:45 pm – Get the port de-accessed and bid adieu to Mary.
2:10 pm – Tim and I go the dispensary to get one of my nighttime medications and to ask the pharmacist if they have a cream that might relieve my joint and muscle pain. They do, so we bought some, along with some medical marijuana concentrates to ease nighttime pain and help me sleep. Pro tip – never buy hemp cream off of Amazon; super smelly.
3:00 pm– Reach home. Eat most of my drive-thru McDonalds.
4:20 pm – Crawl into my jammies and into bed for a nap.
6:00 pm – Wake up and say hello to the rest of the world.
7:00 pm – Tim puts Lidocaine pain patches on my back and shoulders to try and ease the overnight pain. Unfortunately I’m a side sleeper, so these help me get some rest through the night.
7:10 pm – I take 10 more pills, again primarily to stop or slow the side effects of treatment (e.g., neuropathy, gastrointestinal issues, seizures, body pain).
7:30 pm – Climb back into bed to snooze and watch TV with Tim. Drift off to sleep around 9 or 9:30 pm. Tonight I’m signing off at bedtime.
P.S. – Please take all typos with kindness. I’m tired as heck and the grammar police are already napping.