Round Four: bring on the fatigue
So I said I was going to kick off from Festival du Voyaguer last time and somehow I didn’t even get to it. I got lost in the menopause rant, I blame the hot flash. I will rewind it briefly before I go into Festival and Round 4 of chemo. On February 9th I went for my follow up CT Scan. This was in response to the mass they noticed on my remaining ovary when they did the original CT Scan in November. The thought was that it was a result of the fertility treatments I had undergone and hopefully not another Endo or cancerous cyst (although Endo was spotted on it during my fertility treatment as well).
I was absolutely dreading the CT Scan because the last time around was so brutal. The scan itself isn’t that bad, but the drink they make you take is AWFUL! Brooker (Sarah for those of you who have been following along) took me to this appointment as well. She has been a fucking superstar support. We arrived at 7 am (ya, she picked me up by 6:30 A.M….now that’s a good friend) and I was anticipating the grossness of drink in my future. This time around we were at a hospital much closer to where I live and where I’ve been getting the majority of my treatment. Already that added a sense of comfort. We walked in and despite the early time, there were already two people ahead of me. Both were elderly and both had their respective partners with them. It was quiet, understandably so considering the time. But Brooker makes any situation a good time and we were laughing, catching up and exploring social media. She had me relaxed in no time and before I knew it I was being called into the back room. I was confused as I hadn’t been given the drink yet and to my absolute joy and pleasure the nurse informed me that I didn’t need to take it this time around….hallelujah!
Instead I was ushered in to the changing room (where I put on my snazzy scrubs) and sat waiting for my turn at bat. It is a very strange space to be in. There is a long hallway of change rooms and the lighting is so dark that you can easily lose your sense of time. The waiting room seats in the CT area remind me of the old orange seats that are linked by metal at the Bus Depot when it was Downtown (and they are probably from the same time period). It’s just in such contrast to the space age technology once you enter the actual CT room. It’s like time travelling from the 70’s to the 2100’s as you walk through the doorway. The guy running the CT was a sweetheart who’s son is a teacher and who’s passion for people is so evident. He had me relaxed and comfortable despite the injection of the dye that makes me all panicy and feel as though I’ve peed my pants (See blog “CT Scan in 13 Easy Steps” for more information). The test was quick and smooth and allowed for a productive morning for Brooker and I. We went upstairs and got my PICC care taken care of and went for breakfast all before 10 A.M. The best part was I had enough energy in me to go to Cancer Yoga at 10:30, it was a really great day.
The Monday following my CT Scan I had my blood work and clinic appointment. It was there that I found out that my levels were just not rising quickly enough to go through with my fourth round of chemo scheduled for that Thursday. The Neutrophils need to be at minimum 1.2 and mine was at 0.4. We had two options at this point. 1 was inject me with a drug that helps stimulate the bone marrow cells (which cause some intense bone pain) or 2, delay the chemo a week and see if my counts rise enough by then. Luckily the gyno oncology team had just discussed these options and the research is showing that the best success is switching to a four week cycle, so that’s what we did.
It may not sound like that big of a deal to switch your schedule for chemo as this is my full time job at the moment…getting healthy, but a switch in the schedule changes your mindset and your plans. You tend to plan your weeks on the way you’ve been feeling and reacting to the chemo up to now. Knowing that the first three days will be challenging, days 4 and 5 will be the worst and week three will be your best. That being said, I knew that this was the best course of action and it also allowed for more days of feeling good rather than fatigued.
My chemo was originally scheduled for Thursday, February 16th , the day before Festival was to begin. I had counted that weekend out with hopes that I would be well enough to possibly go the following weekend. The change in the schedule meant that I was most likely going to be well enough to go the opening weekend. Normally I try to go as many days as possible out of the 10 day run, but I knew I would be lucky to make it once or twice this time around.
Music is in my soul. It is so much of what makes life beautiful and the main reason I moved to Winnipeg. The music scene in this city is incredible. The talent that spans over the multitude of genres is truly remarkable. I’m sure the long cold winters have a bit to do with it, but the spirit of the prairies is in there somewhere as well. Although I love so many styles of song, Festival tends to host the majority of my local favourites. It blows my mind how much talent you can take in over 10 days for $32!
With Red Moon Road, The Middle Coast, JD Edwards Band and Wide Mouth Mason all scheduled for one night on the same stage, my date was set. Dressed in my red flannel shirt, insulated leggings and my long blonde wig, I was set. The tent filled up with so many people I adore and by the time JD played the dance floor was filled, the wig was off and I was surrounded by a group of powerful women who made me forget the word cancer. I was just Charlotte, in my absolute glory.
I keep reminding myself of that day, of that moment, because unfortunately the energy I felt that day hasn’t returned since. The joy is still there, but fatigue has set in and the idea of dancing is just a memory and goal at this point.
I managed to make it to Festival one more day, the Monday. But even that day I was limited to bench warming and only a few hours of music in the afternoon. My counts were rising, but my energy was slipping.
That Thursday was my fourth round of chemo. Brooker once again took me, with Sean scheduled to take over later on in the day.
My counts had risen and I felt ready. Boy was I mistaken.
As soon as I took my first pill (it is a tri pack that is supposed to tell your brain not to feel nauseous during the chemo that you take an hour before chemo and the morning of the two following days) I felt instantly nauseous. Here I was taking a drug that is supposed to cure my nausea and now it felt like it had caused it. I hadn’t even begun any form of IV treatment so we knew it wasn’t the chemo or any of the other drug cocktail they feed me with during treatment.
I was confused and so were the nurses. What resulted was another marathon treatment day, lasting over 7 hours. I was holding my blue throw up bin tightly throughout the day and felt awful. Here Sean thought he was only going to be with me for a short while before he could drive me home, and once again I was one of the last ones to leave. I joked that it was the chair, as I was in the same one I had been in for my second round of chemo. Ironically it is the one next to the bathroom…which I needed often. But the symptoms occurred before I was even admitted into the treatment area. As I said before, it was initiated with the pill which I take an hour before the chemo is supposed to start.
Brooker helped distract me by taking some powerful pictures and made me feel like a warrior, however I was feeling weak and defeated early on. By the time I was released I felt like I had been run over by a truck….and a car, perhaps a train. It wasn’t delightful.
My mom came in for the weekend to take care of me. She has been amazing, but she hasn’t had to see this side of things yet. I know it’s a bit of a role reversal, but I was trying to protect her from it. I don’t want her health to worsen because she is worried about me. Because I know I’m going to be fine, I just need to get through this year and then I’ll be ok. But she is my mom and she will worry because she loves me more than anyone else ever will. But there was no hiding it this time around. I was useless. I mean it. I had zero appetite and even less energy.
The chemo fog and fatigue is unlike anything else I’ve ever experienced. You sit there like a zombie, unable to engage in proper conversation and certainly not focused enough to read or even pay attention to tv. We ended up binge watching The Last Kingdom, a show luckily I had already seen so I didn’t need to be able to comprehend what was going on. Most of the time I slept. My mom is used to me being go, go, go, fuck, I’m used to me that way. But chemo has other plans. Your job is to sit and rest as your body restores. A job I hate. I love to clean, to cook, to teach, to move and now I’m stuck with zero energy and enough focus to rewatch tv shows. This may also explain the infrequency in which I’ve been writing lately. There aren’t many days I have the energy/focus combo to manage to make complete sentences that make sense (the grammar and spelling errors may or may not have the chemo to blame).
My appetite did return by day 5, but the energy is still lacking. I tend to be strongest in the morning. So if you want to get a hold of me or do something fun, 6:30 A.M. -11:30 ish is best. By noon I’m crashing and then I usually get a boost sometime in the evening, but not every evening. Some days it is only the morning and others it’s nothing at all.
I went in to Brandon last week to visit family and friends and out of the three days there, only one evening did I have enough energy to actually see anyone outside of my mom and Glenn’s house. I guess that’s not exactly true, I did get to go for lunch and supper with Megan but I napped between meals and almost immediately afterwards. The eat/sleep combo may explain the weight gain…
The night I did mange to go out was so completely worth the trip though. Four of my long time girlfriends and I went out for apps and it was an evening filled with laughter. Stories jumping from high school shenanigans, to men we dated, to the wonderful children that are filling up their lives today. They have each become incredible mothers (one step…but she is a mom just the same) and I am so awestruck in the women they have become. I am envious and dream of being a mother every day, but I feel so lucky that even if I can’t have kids, I know I get to be a part of their lives.
Ok, now I’m getting sappy and distracted by other thoughts of fertility. Trying to stay focused on the topic at hand this time around.
Chemo round five is scheduled for this Thursday, March 23rd and I am nervous. I already feel so fatigued and I anticipate it is only going to get worse. On the flip side, I am thrilled that I am nearing the finish line of treatment and can’t wait to be in remission. But for now I need to starting planning on meals to prep before I don’t have the energy to cook and audiobooks to listen to (reading is just not in the cards most days). If we are friends in real life, I would love to read some messages of inspiration and suggestions for fighting the fatigue, heck even if we don’t know one another I would still love and appreciate that. Ok, I’m going to go splash in a few puddles and enjoy the first official day of Spring!