Ya…that part about things being "so far so good" tickity boo last week… SO DID NOT LAST!
I laugh now at how ridiculously high I was when I wrote that last post. I really had no idea what kind of shit storm I was about to endure in the next four days to come.
Let's do an "Ashley's First Chemo Cycle Recap" shall we…
Day 1:
The Ativan. It was a must. I completely began to lose it in that chair. The chemo nurses at St. Mary's are awesome and I had Mike, my Mum and best friend Tanis there to alternate and take shifts sitting with me. But there was no amount of niceness from the nurse or comfort from anyone that could calm me down when I got in the chair. I felt like I was strapping in for a plane ride to nowhere land. Committed to injections that I had no idea what kind of effect they were going to have on me. I was completely terrified. When the nurse started giving me my pre-chemo anti-nausea pills my ears began to ring. I hot-flashed and started to panic. I then realized that I didn't know what the nurse had said at all as I was trying to not spit out the pills and then that was it. The anti-anxiety Ativan pill came to the rescue once again!
Once the Ativan kicked in things got a bit easier to deal with. I was still nervous but it was manageable. Mike sat with me the entire wait for the drugs. That's the longest part about chemo day. The waiting of the drugs. It takes them a while to mix them up. So we both sat there nervously holding hands and looking around the room with wide eyes. The other people there glanced over me a few times and I knew the elderly people wondered why someone as young as me was even there. This left a me fighting back some tears a few times. I was sad to be in the chemo chair. I kept thinking "I shouldn't be here."
Once my first chemo cocktail arrived my nurse sat with us to administer the bright red liquid…it was one she had to inject slowly herself little bits at a time and only took about 20 minutes. Her calm voice helped me feel better as she sat with us… I remember turning away and not wanting to watch. The next drug took over an hour and a half to get in me as it was a drip and the drip seemed to take its sweet ass time. I spent the time playing games on my phone and eating broccoli and rice crackers. I now can't stand the idea of eating either anymore. The idea of broccoli now makes me gag. When I imagine it I can smell the hospital and the smells from all of the drugs and I just can't do it.
My biggest worry from the next cycle is now what the heck am I going to eat during it? It can't be something I love because the chemo might ruin it for me. It has to be bland and boring I think.
Day 2:
I can't recall much from this day. Actually after we left the hospital I remember going over the Mike's sister's house to visit and see our estranged little boy cat Tao. But after that I honestly have very little memory from that first night and all day of day 2. Blaming the drugs.
Day 3:
Awful.
I woke up in the darkest pits of despair. I was nervous and anxious for my Mum leaving. (I don't care how old I am… when you feel as rotten as I did a Mum is required!) The nausea had begun full swing and all of the drugs working against it were mind-f-ing me up like crazy. One of the drugs is a steroid that acts as an anti-inflammatory but also targets nausea. It makes me hyper-sensitive but can also give bursts of energy as well. They told me I may have urges to get up and bake in the middle of the night. This did not happen. But a very sad pathetic dark little cloud burst with lightning bolts over my head did.
As Mike stated one day last week… Mornings are not my friend.
Day 3 morning sucked. I felt hungover but drugged up and woozy. I felt out of control. Lost and scared. Was I ever going to come out of it? I was only on the third day and there are over 100 more to go. Is this what the next four months will be like? Dizzy and sick to my stomach with no appetite for anything? Was I going to shrivel up and die because I can't eat? Who is going to sit with me when my Mum goes and Mike is at work? Will I make it through this? No. I won't. I'm too weak. I'm all alone and no one understands and I'm going to have the longest nausea-filled four months of my life!!! Everything sucks and I can't do it!!!
I wish I was five years old.
This is what I kept going back to when things were overwhelming. Which was 95% of the time that day.
I wish I was five. Where my life was care-free and I had no worries or concerns. Living in White Rock on a quiet little street. Walking uptown to K-Mart with my Mum and Travis in the stroller to pick out new Keds shoes. Sun dresses and beach days on weekends. Collecting snails in buckets in the backyard and chalking up the driveway with hopscotch. Playing outside after dinner and having no sense of time. Nothing to cause me anxiety or nervousness… except of course the idea of the first day of school rolling around. But other than that… how simple and blissful is life for a five year old.
And now I was 'homesick' for it.
I was a big sad depressed mess. Wishing to just be as innocent and relaxed as I was when I was little. And then I was sorry for my younger self. I began feeling upset for that five year old girl. She had no idea what would happen to her. That she would be dealing with cancer 23 years later. I couldn't protect her and I couldn't do anything about it. I am here where I am now. A sad pitiful little heap of sorrow. One minute I was breathing through it. The next I couldn't control the tears. How could I have let this happen to myself? Why did my body betray me?
And that's when some seriously destructiveness began in my mind. But I now know how much the drugs I was on were responsible for this. At the time I was consumed by what the drugs were doing to me I didn't know what was what. My Mum tried for hours to help me through it. Eventually getting outside gave me some reprieve. I think that is the answer.
Day 4:
See Day 3.
Day 5:
My Mum left for Ontario early Saturday morning. As much as I was worried about her leaving me I knew she had to go back. And luckily this day improvements began for me. Nausea lessened and I was no longer taking the anti-nausea mind-f&#%ers. And the sunny weather we've had meant lots of lazing on the beach blanket and breathing in the salty ocean air. I thought to myself: "If the sun could just stay like this for the next 100 something days... If I could just sit at the beach each day and just be… then maybe I will actually get through this."
Day 6:
I had decided this was my turn-around day. The day I was going to start getting better and from then on I would feel better each day as the week went on. I knew now that I was free from the mind altering drugs and that I was going to be ok. That I was going to make it through this.
Days 7 - 9:
Each day I got a bit better. I stopped taking Gravol (the only thing that doesn't make me nutty) and was just taking Tylenol occasionally for aches and pains in my body.
There are injections I received for 7 days straight after chemo to boost my white blood cells. I have home care nurses come in each day to give the shot to me to save Mike from having to do it. The injection is $$$$!!! One single shot each day is $200. Luckily I have good coverage and pay it initially but get it back later. Hooray for collecting points on my credit card too! That Hawaii trip just might be doable by the time this is all done from the points I collect from all of the drugs! :)
The effects of these shots have just recently started to cause me bone pain. Mainly in my hip and leg bones. It's not too bad but definitely doesnt make me want to go for any long walks.
Day 10:
Here we are. It's Day 10. It's sunny-ish. The beach beckons me. So do things like crackers and cheese. Not on my usual list of things I've been eating but somehow chemo has sent me into a different realm of food cravings. I wanted caesar salad the other night so badly with roasted garlic. Mike made it happen. He is in a word: Awesome. Have I said this already? I just say the magic food words and DING! It's on my plate!
So… chemo has led me astray a bit from my usual no dairy no gluten regimen. But I don't think it will continue. I just know how crappy I feel after I eat it and so these random wantings can't last long. One thing I do notice is how bland food is so not something I want. They recommend it during chemo and say that eventually I will lose taste buds too. So maybe it won't matter eventually anyway. So for now, I feast on good tasty flavourful dinners. Made by Mike. Because he won't let me do anything. Anything! I mean it! I balance on a log at the beach and he's all "Stop that, you're gonna fall. You can't get hurt right now cause you're on chemo!" and "Don't touch that knife!" and "Watch out for that sign." "Leave the dishes for me. You need to sit and do nothing." "Don't touch the mandolin kitchen utensil thingy - It's sharp!" He's SO funny. I just keep thinking what a funny Dad he is going to be one day. All bossy. Protecting them and keeping them from harming themselves constantly. Padding them with bubble wrap when they go play at the playgrounds.
Ahhh Mikey :) He just rocks.
So what's in store for my immediate future:
- A hangout with a good friend tomorrow :)
- This weekend we have a little getaway and an event in town to attend.
- The possibility of a head shave is on the horizon if my hair decides to start falling out.
- Bloodwork on Monday to see if my platelets and red/white cells are doing good.
- If blood levels are good I will be back in the chemo chair on Tuesday at 9am. Hit me with it again!
Right now I can only hope that each round is going to go like this one. Minus the crying and hopelessness like I had on Days 3 and 4 of course. Mike has instructions on how to deal with me during those times. Specific lines we have written down in case I lose it and am sent over the edge. Words to remind me that this is not forever. A song to play that will hopefully bring me back down to earth.
If Mike (or whoever is with me!) can just remind me that it's the drugs making me crazy emotional then I will hopefully be able to truck along and make it through the tough times.
I know it could be worse.
At least I haven't actually been sick too. I hate throwing up. I hope that this is how it's always going to be from now on each round. No barfing please and thank you.
I know that this cycle has actually not been THAT bad and I am lucky for it. Since Monday I have almost felt normal. I haven't been nearly as tired as they said I was going to be. I'm not running full force exactly but I am definitely not as weak and exhausted as I thought I was going to be.
So in a way, since my turning point on Sunday, this week has been easy. Good for easy chemos. May the next one be just as manageable. And may the sun be out as much as possible too so I can do some outside lounging. Because if there is one thing that can give me a glimmer of hope - it's the sunshine and the beach.
Hi Ashley, reading this blog post of yours brought me right back to my first chemo session in early June. My god I remember those days, especially days 1-5 which were pure hell.
ReplyDeleteIt sounds like Mike is a hero and has done an amazing job looking after you through this, both emotionally and physically. The three week up and down cycle between chemo treatments is pure torture, but every time we go through it is one less time we have to, and aren't you glad now that it's all DONE!!!!!!
See you on the coast sometime this month.
Michelle
It WAS pure hell... I hadn't read this since writing it so it took me back too... I can't believe the things we have to endure. And I did it every 2 weeks, instead of every 3 so I didn't get that extra week of reprieve that everyone on the 3 week cycle got. It was pretty hardcore. I wondered if I would make it through without a break, but I managed to power on through on schedule.
DeleteMike was truly amazing through it. He helped me through some tough times.
See you soon.
Ashley