This post has been sitting in my draft folder for a while now. I often hesitate to write about the collateral damage of cancer and cancer treatment because I really don’t want to drag anyone down and it’s all just so personal. Go ahead, laugh at the irony of that statement given that I said this time out I’d be very real with what I posted. So, fair warning, this isn’t the most upbeat of posts.
Let me say something I haven’t said here yet: cancer crap is never-ending. It begins from the moment you get your first cancer diagnosis. You can’t completely be rid of it because you live with the ongoing threat of recurrence. Sometimes the cancer crap is about collateral damage—you know, aftereffects that stick around. Such aftereffects can be short term, like hair loss and nausea linked to chemo. Sometimes the aftereffects are longer term. Most of that kind are of the physical sort (e.g., lymphedema; nerve damage in my feet and left hand from the chemo), but I manage. And some collateral damage is…well…just incredibly private and will remain that way.
Now I have side effects happening due to the metastatic treatment, and these will be with me for as long as this fight lasts, possibly getting worse or adding new ones as time goes on.
I used to balk at the words “fight” and “battle” because I hated the concept that one day I could lose the battle. With something like this, I truly hate the concept of ‘winning’ and ‘losing’ because you can’t have a winner without having a loser. It’s as if saying that if I had done something different, my outcome would have been different. When it comes time, I want the statement to be that Gayle died from cancer, not that I lost the battle. And I want to be remembered for having thrived throughout the fight with cancer, living as graciously and courageously as I could. Make no mistake though: it IS a battle. There is a lot of personal energy and effort put into the fight and I am up against horrible odds.
Cancer crap exhausts the body and the mind, it can rob one of dignity and plays havoc with relationships and families and just about everything else important to us all. I battle to remain positive when cancer crap makes me feel unwell.
I’m learning very…reluctantly…that I don’t have to be stoic all the time.
The main reason I freaked about the thought of losing my hair this time was because the chances were strong that it would not grow back. That’s just a loopy and odd response for me to have because I would gladly be bald for the rest of my life if it meant having an extended life. But we aren’t always rationale in emotional moments…admittedly, I am emotional before I’m rationale.
Accepting my side effects is me saying, “Okay cancer, you motherfluffer, do your fluffing best because I can deal with whatever you fling at me.” So yes, I have side effects. Every. Single. Damn. Day.
I’m lucky that my side effects are not crippling (qualification: so far). They are tolerable and manageable. Most days are good. But every now and again, combined with the constant fatigue, they take their toll and I need a mental break as much as I need a physical break/day off.
Fatigue is a big fat nuisance. It’s constant. I have no stamina. I feel washed out and constantly feel drained. Cancer-related fatigue is different from the fatigue of daily life because it cannot be overcome with a good night’s rest. Add in insomnia to the mix and everyday functioning overall can be a challenge. I’m sure you know this already, but adding for many who may not, insomnia is a sleep disorder making it hard to fall asleep, hard to stay asleep and causes a person to wake up early and not be able to fall back asleep. Thus, insomnia contributes to fatigue. Let’s add this up: I have cancer-related fatigue, pandemic fatigue AND insomnia-related fatigue. Prior to this cancer treatment, insomnia meant getting as little as 3 hours sleep in a night, but with this cancer treatment I’m getting less than that on the days that insomnia is bad. My record to-date, which happened within the past month, was 27 hours AWAKE. It took me two days to catch up on sleep. I’ve tried melatonin, CBD capsules, lemon balm tea (which only increased my number of pishes in the night). It’s hit and miss on what works. And no, I’m not interested in adding in a prescription sleep aid. There’s no real pattern to the insomnia, but it’s an almost guarantee when I’m stressed. No surprise, when I’m stressed, it’s worse.
I have bone aches and joint pain. One day I swore I could count every single vertebrae in my spine based on my movements. Mostly the pain is in my back, hips and legs. I often look like I have ants in my pants as I am sitting during a videoconference call. The bone aches and joint pain are caused by the aromatase inhibitor (hormone blocker), and my overall concern isn’t the aches but the possibility of bone loss (osteoporosis). My bone scans from last year showed arthritis. Something I’ve known and felt for a couple years now. It’s the constance of them that’s draining. Pretty sure that I’ll have another bone density test at some point this year.
I have nausea. Last fall I mentioned that I had a severe bout of nausea and vomiting. The blessing is that the vomiting was a one-time occurrence, though the nausea isn’t. Originally I was getting nauseous for a two-week window – the week I’m off rotation on the targeted treatment and the first week of starting it up again. Sadly now I can have nausea at any time. It is usually various stages of an upset tummy, without the urge to throw up. My nausea is now mitigated by a prescription, because Gravol wasn’t cutting it. However, I remain traumatized at the thought of vomiting as I have a real fear of it. I’ll save the vomit story for another blog post cause it’s a doozy and explains everything!
Scanxiety is incredibly stressful. Each time I do an MRI (more so than the CT scan) I wonder if this is the time that shows my first line of treatment is no longer working? Intellectually I know that the results will be what they will be, and worrying will not change them. And remembering to cross that bridge of what to do when and if you have to is the hardest part of regular scanning. Still. It’s hard to shut off my mind. It’s unfortunate that scanxiety manifests itself in very real physical responses (heart pounding, headaches, tightness in chest, upset stomach, insomnia to name a few), as well as emotional (irritability, apprehensive, emotional).
I cannot begin to express how grateful I am that the farthest I have to go to get to work is just down the hallway from my bedroom to the living room, and that my hours can be flexible so that when I’m having a bad day I can take a nap to help rejuvenate me even just a little bit. I could not manage or be at work if it weren’t for working from home. If there’s one thing this dang pandemic has done, it’s normalized working from home.
I don’t know what the future holds or what additional curves cancer will throw at me. The image I chose for this blog post is so me right now.