Note: This blog is sponsored and brought to you by the corticosteroid Dexamethasone (Decadron) – also known as Crazy Drugs where you go from normal to homicidal in 0.3 secs and have enough energy to paint an entire 3-storey house in 1 day, and Busulfan chemo along with a handful of other drugs such as Lorazepam (Ativan) to relax and Odansetrone (anti-emetic/anti-nausea) that would normally put me to sleep but doesn’t cause I’m too stubborn and pumped up on steroids and Dilantin (anti-seizure drug against the current chemo I’m doing). I am therefore not responsible or accountable for anything said down below that could be construed as rude, or disrespectful, or just plain stupid, crazy and nonsensical, nor the length of this post which might or might not prevent you from working or sleeping for at least 20 minutes.
Disclaimer: It’s a long blog so have a cup of coffee/tea and put your feet up. Ready, set, go….
Three days to transplant. It feels strange even to write it and realize how quickly it will be here.
I have begun the Busulfan which should be much stronger than the last 5 days of Fludarabine chemo. Then again, so far in this crazy chemo world, I have not once been sick. Ok, that’s not true. I did vomit when I was hospitalized at St. Paul’s back in October but that was when they removed the lid from my food tray and the odour struck me like a rotting whale carcass beached for 3 weeks. Ok so most of you never smelt that but imagine the worst smell ever, times a gazillion. That’s what hospital food smell like to us most of the time. Most often, it has nothing to do with the food itself, it’s our chemically induced highly sensitive olfactory sense that goes into hyper drive. Hence, hospitals are scent-free otherwise you’d have a bunch of patients vomiting as you walked into the room with your fresh-smelling shampooed hair, or sexy after-shave, fresh spring scented deodorant, or the most expensive perfume in the world or cheap dollar-store crap. In our world, it all amounts to smell, yuck, heave, vomit!
Back to the Busulfan. I am trying to visualize and actualize the fact that I have so far never been sick on chemo and am not planning to be sick on this one. At this point, it’s game on chemo-sabi, I’ll show you who is the boss of me. Yes, I’m that competitive. That’s why I have a large photo of Black Tusk Mountain on my board, along with pictures of me climbing up and down this black volcanic remnant towering over everything else in its surrounding. I remember the pain of those climbs and I made it then. Ok so I wasn’t necessarily unscathed from those adventures but it was mainly due to my stupidity of not putting sunblock under my chin and on that tiny little area under your nose and on the upper lip, as well as my eyelids and ear lobes. Trust me, a second degree burn in those areas is brutal.
I was telling my nurse that I was trying to beat the nausea and promised not to play it brave and take whatever anti-emetics they had available. So far so good. However, to be on the safe side, could she please bring me the small vomit trays, just in case. Wise-aleck as she is, she brought me 20 trays along with a brand new box of tissues! Talk about faith in me…. she thought I’d get a kick out of that and we laughed and frolicked in a field of wild flowers (my colleague Susan called it flighty birds - I love that expression). Actually, there were no flowers since we’re not allowed, but it was quite funny and I so appreciate her sense of humour.
On my whiteboard, I have written (in consensus with my roomie) ”Only people with a sense of humour are permitted on the premise. If you tell us we are an inspiration one more time…we will not be responsible for our actions and might have to shoot you!” With this said, we appreciate that you think we are so brave, strong and an inspiration…however, for us, we’re just trying to live, one day at a time. We don’t do this to be an inspiration, the alternative would be to curl up in a corner and die – not an option! My roomie is also doing massive radiation and it’s no walk in the park so she’s having a “shitititist day” (her word, which is brilliant, just sound it out). Although I think today for her was an “F&%*ing shitititist day.”
Alright, back to reality. Dr. Shepherd came by to check up on me. He is the head of Hematology here and a brilliant man, along with being quite funny, and having a life-size cut-out of himself in the main lobby, urging people to wash their hands (I’d love to have a large cut-out of myself being annoying/annoyed – maybe there should be one of me at the office, in case they get too complacent and forget about me). Anyways, the doc’s idea of a check up on me is asking how I feel, I say fabulous, he pats me on the back and off he goes. He leaves the actual grunt work to the intern/resident. Seriously though, when I do have questions he does take the time to sit down and answer all my repetitively stupid questions. The questions are not necessarily stupid to begin with, but after the 20th time of me asking them (not once did I see him roll his eyes or sigh) it must start to get pretty annoying. (I know none of you believe me when I say I can be annoying – I hide it well!)
All the medical staff here are brilliantly patient, caring and sympathetic. I love them all. They definitely make this journey a little easier. They all know I spend most of my time in my ‘office’ by the window and do everything they need to do with me sitting in the chair. Even the docs come into my office. Dr. Telio (resident) even uses my space with a view and my computer occasionally and I always thank him for dropping by my office. (I think he’s jealous of my office view). I’m nice that way, I share. I also try to share my meds and chemo but somehow never have any takers on that one. I bet if I went down on Main and East Hastings I’d have a few takers (for those of you not familiar with that area, it’s the drug addict capital of the world…or so we think).
Finally I had some good solid sleep last night. Well at least in chunks of three hours. This is a huge improvement since many a night I could only sleep 1 1/2 or 2 hours before waking up for a pee-trip. So three solid hours of sleep at a time was delightful. However, and of course, there’s always a ‘but’, the wakening was a little more urgent. Three hours worth of urine in my bladder meant overflowing the 800 ml toilet measuring container. So tell me, did you ever imagine knowing so much about my bodily functions? Well, this is my world now. Again, I can’t emphasize enough how very similar to babies we are. We sleep only for a few hours, pee all the time, someone else changes our beds, have our food brought in, and trust me, if the food is slightly delayed or unappealing, we whine about it. The only difference is, in lieu of a pacifier I prefer a coffee.
There’s something to be said about sleeping just enough to make you want to sleep more – you wake up groggy. My nurse last night came for my vitals, replenish my IV bags and do the daily blood draw around 5 am except I was sound asleep. I normally wake up as she walks through the curtains. I am a very light sleeper, even with earplugs, unless I’m completely exhausted then I’ll sleep through a train wreck. I was in such a deep sleep last night. She had to shake my leg for a few minutes before I woke up. I kept dreaming that someone was pulling my leg and was getting annoyed. Good thing I didn’t kick in my sleep! After all was said and done, I was able to fall back asleep.
Come 8 am, the new nurses come around, all perky from the start of their 7 am shift. It’s way too early to be wide awake especially when you spend the night waking up every 2-3 hours. We go through the whole process of vitals and meds again, except now, it’s time to wake up for real and get ready for the day. I am one of the lucky ones to have a sink in my corner of the room so teeth brushing and face cleaning is a little simpler for me, normally anyways. This morning, I just didn’t seem to be able to wake up completely. I tried washing my face while wearing my glasses – sigh! Then my glasses needed to be cleaned. I brushed my teeth twice in the span of 15 minutes (I usually brush them and rinse with a special solution 5 times a day) I’d forgotten that I had already done so.
While sitting in my office (corner chair by the window) I am able to plug-in my electronics (laptop, phone charger…) into the power bar on my IV pole. The thing to remember is to make sure to unplug the said electronics before getting up. Needless to say, I write this from experience. I got up too fast (which in this case means I completely forgot as speed is definitely relative for us, everything is in slow-motion, and a bad one at that). I forgot my stuff was plugged in, got up and heard the crash. Yes, my laptop and phone took a dive. Fortunately they did not fall from high but still, electronics are not meant to fall on a hard floor, no matter the distance. Everything seems fine but lesson learned, I check every time now before getting up.
The one thing about my meds right now is the internal struggle going on in my body and mind. On the one hand I am given Ativan to calm down and relax, Ondansetrone to prevent nausea (both of which makes you sleepy) along with Dexamethasone (steroid that makes you all speedy and nuts). So tell me, which side do you cave in to? Do I lay down and rest, or run three times around the block? Let me remind you that both options are impossible here. Resting during the day with the constant traffic, interruptions and noises is near impossible, and running around the block would require me to be allowed outside-world freedom – not going to happen anytime soon. I guess it’s all part of being a libra….going back and forth between two points and never really making a decision one way or another and wanting to do it all at once. (At a restaurant I always choose a sample platter as I can never choose between 2 or 3 options and that’s why I change my mind a lot).
Another interesting fact about hospital life. Although we wear our pj’s, or a variation thereof, I nonetheless still wear a bra during the day (for obvious and less obvious reasons) along with daytime shoes. Slippers are for nighttime, regular shoes for daytime. It works both psychologically, giving you a semblance of normal real world life, as well as physically giving you more stability when walking in the hallway. And at night, slippers are easier to put on at 3 am when trying to rush to the bathroom. See, there’s always an ulterior motive.
So the thing about a bra, aside from its obvious use (other than stashing tissues like our grandmothers used to do), is that it is also used to stash and hold tubes and wires. Aha, you never thought of that, eh? We wear a string around our neck not because it’s cool and all the other kids do it, but to hold up the tubes and release some of the pressure from the exit site of the Hickman Line. Imagine the pressure on the line if it just hung out of my chest? Imagine with my luck, catching the wires on something and yanking on it! (It’s happened a few times already – ouch). So, the string holds up the wires but then the pressure is at the back of your neck. So here is where we ladies have an advantage over the guys. This extra piece of clothing we wear daily for support takes on a whole new function. Not only is it a common “over-the-shoulder-boulder-holder” but it also stashes tubes and wires. Not too shabby for a small piece of clothing (ok, not so small in my case) but you get the point. I will need new bras after this journey but that’s a small price to pay and a nice gift to myself for being a little more comfortable now.
Great many thanks to all of you that have so generously responded to the call for fresh fruit (thank you so much, now scurvy will no longer be a possibility). Now, let’s move on to my other favourite food group – coffee and chocolate! Monika has brought me a cup filter to see if I like coffee done that way (this will be my third attempt at finding a way to make myself a good cup of coffee in the morning). Also, Anita has mentioned a popsicle maker which I think is brilliant. You might think it is simply a treat-maker but in our world, popsicles are sometimes the only thing standing between us and starvation or craziness from mouth sores. In a few days I will be beginning some meds, including the current chemo, that might promote mucositis (awful boo-boos in your mouth) and popsicles then become one of the few options for relief and nutrition.
Ok so the next food group – also known as chocolate. My preferences are as follows: anything from Mink (thanks Anita) or Purdy (of course) especially Purdy’s peanut butter chocolate (yummy). Dove bars with individually wrapped square. They have one which is half dark and half milk chocolate and that one is oh so delectable….or anything at all really, especially if it’s cherry filled and as long as it is good chocolate. But please, (never thought I’d say this) but moderation is good. This I say not because I want less chocolate, but because storage space is limited.
If any of you are coming for a visit, if you can please call me to see if I need a quick run at a local coffee shop for a coffee or corner store for green tea ginger ale or white tea raspberry ginger ale, that’d be great. Who knows what I will feel like by the time you get here. Oh and by the way, never is there any obligation for you to bring anything. People always ask me if I need or want anything. If you mean it, I will tell you. Otherwise, just bring yourself and the pleasure of your company will be more than enough to satisfy my craving for a treat.
More tomorrow for my last day of chemo for an update on whether or not I conquered the side-effects (so far so good).