As part of my weekly CyBorD chemotherapy treatment, I take 40 mg of Dexamethasone on treatment day — Saturday. I apologize in advance to Nagib and my family for what I will be putting them through over the next couple of days while the Dexa is in my system.
I thought it would be amusing for you to read about my Dexa day this past Saturday, August 17th and into the next day:
7:30 am – Wake up and consume 23 pills (including CYclophosphamide and Dexa) prior to going to the hospital.
9:00 am – Mini makeover at Shoppers Drug Mart for a photo shoot for an exciting upcoming venture (stay tuned for details!).
11:00 am – Photoshoot, purchased through Groupon, in the Bathurst/Wilson area, with Nagib and Sabrina to be part of the experience.
12:30 pm - I forgot my anti-nausea pills which I'm supposed to take one hour before chemo. Drive back home. Ingest 2 more pills.
1:30 pm – Chemo appointment at Princess Margaret. Traffic is heavy downtown and we have to make several detours from our usual route. On the way, Nagib and Sabrina are asking if I can sneak them a couple of dexas to match my manic energy. I think they are serious. The slow injection of the BORtezomib (aka Velcade) in my abdomen is painful. Sabrina holds my hand and we sing “Ain't no mountain high enough..” for as long as it takes for the infusion to be completed. The nurse cautions me not to move. Thankfully, the process is done in a few minutes.
2:30 pm – Leaving Princess Margaret, I have too much energy. Nagib drives us to Spadina Avenue and makes us walk through Chinatown for an hour to expend some of this energy in a fun part of the city. There is a festival on the street, and his hope is that this will tire me out and help me sleep.
4:00 pm – There is a summer thunderstorm and we are caught in the rain so we sneak into a restaurant for some Chinese food and great dexa-infused conversation.
5:00 pm – Return home. Too much energy with no indication of slowing down. Nagib invites me to take a nap. I try, but to no avail. Instead, I share strong opinions about politics, sports, almost everything in the universe... Nagib does his best to calm me down. I notice that I am exhausting him, but I can't stop.
5:45 pm – Went to Unionville Jamatkhana for a Bay'ah ceremony (similar to a baptism) for my cousin Hussein's son, Adam, with the plan to come home and nap. But sleep escapes me.
7:00 pm – Drove to Willowdale Jamatkhana to hear a recital by 6 year old Liam. Socialize with people and increase my energy.
9:00 pm – I’m only now hitting my stride! Nagib suggests we go watch “The Lion King”, my new favourite movie of the year. I try my best to be a good date, rather than an aggressive, opinionated, me-centred date. With mouthfuls of popcorn, nachos and cheese, pop and chocolate, I succeed.
12:00 am – Return home. Can’t sleep. My brain is firing on all cylinders, so I work for an hour. Nagib shakes his head and goes to bed. He wonders aloud what our lives would be like if I was always on Dexa.
1:00 am – Force myself to sleep but it's a losing battle. Listen to the sleep meditation on the Headspace App. Manage to sleep for an hour or so.
2:30 am – My brain is fully active. I plan 3 new projects to work on: short-term project is to learn Microsoft OneNote; mid-term project is to convince my team that we have one more CD inside of us to release this year; longer-term goal is to teach a course on Udemy.
I can’t sleep but I force myself to stay in bed. I have now solved a couple of the world's problems and written 2 blog posts in my head. Check my phone a few times. Awake at 3 am. Awake at 4 am.
4:00 am – My alarm goes on and I go to Jamatkhana with my mom and sister for morning prayers. Can’t concentrate as I have multiple things going on in my brain and am completely distracted.
6:00 am – Come home and still can’t go to sleep, so work until 8 am until my eyes start to close and sleep finally beckons.
8:00 am – Welcome sleep. Nagib tells me I was snoring fitfully - this makes me happy.
10:00 am – Fully awake with Dexa still in my system for another day.
12:45 pm - Lunch at Jerusalem Restaurant with a friend from overseas and her family.
Oh...before reaching Jerusalem, we realize the car is nearly out of gas. The remaining mileage indicator shows 1 KM. 1 kilometre! I used to panic when the fuel light came on at 30 KM, and here I am....the car is running out of gas, but my tank is still nearly full...
I love Dexa!
The problem with Dexa is that there is the eventual, complete, far-reaching crash, typically on the Monday and Tuesday. I know I will have trouble getting out of bed on those days, my emotions will be all over the place and I expect that I may be sad, or quiet or irritable or needy. And I may want to cry – a lot.
On those days, I hate Dexa!
I try to manage the crash by preparing for it. I keep a book on hand to read and identify 3 podcasts I want to listen to. I sleep a lot and do this without any guilt. I think about movies I want to watch and Netflix becomes my best friend on those days. And then on Wednesday afternoon, I slowly start to feel better. Thursdays and Fridays are great and then it’s Saturday and back to chemo day!
This will be my life for another 3 months, so God bless my family. I have now completed 4 out of 16 treatments, so I am one-fourth of the way through. My plan during the Dexa days is to drive at full-speed until I crash and then rest when my gas tank is empty. In the meantime, I am keeping the Dexa away from my family lest they try to sneak my stash!