When I started this blog, I thought about a name that would convey my day to day life. Marriage, kids, and just my day to day speed of 90 mph to nothing and stopping at nothing to slow down. I wanted a way to acknowledge through words that I was happy, I am married, and that despite those two, life can be overwhelming. That despite happiness, a great spouse, kids, a house, a good job, that life can still be a LOT for us to deal with. When I wrote it, I never thought that one day, my overwhelmed would be cancer. I never thought about the definition of that word and the importance that one day it would mean to this blog. Through the time here, it has seen lots of fun posts, but it has seen lots of serious ones, too. Parenting, marriage, jobs, sad events, good events, diets (YUCK), medical issues, and more. I’ve got more drafts in my folders than I know what to do with and sometimes, my inner filter kicks in and says, “Nope, don’t post that one.”

Then, I have those days where Jesus pokes at me and says, “Yep, post that one today.” THOSE are the days I really dislike posting and I LOVE to argue with Him. Today, I guess, is one of those days.

It’s been a while since I’ve written specifically about brain cancer. I’ve dripped it into some posts and those around me know it’s still there, but I honestly hate talking about it. I see random videos online about people faking cancer (brain cancer seems to be a favorite to fake because it’s not “visible”) and it repulses me. It makes me not want to talk about the stuff I’m going through and shove it deeper down. But the reality is, cancer is part of my story.

There’s been some basic things I’ve been ignoring and trying to offload them as something else when in reality, I likely struggle with the real side effects of cancer and the medication. I don’t want to admit that because it means that I have to tell a doctor. (Note to self: talk to the doctor after this.)

I’ve not shared with many that I saw an oncology psychologist. Mind you, I had my surgery in February 2023. I’m about to start my 3rd year of the real diagnosis of that word. I feel sick admitting I have cancer or even talking about it because I have known so many who have had hard battles where they have been so sick and looked like the life was taken away from them. I struggled with talking about that because I have survivors guilt, which I didn’t think was a thing. I feel sick talking about my own cancer while others are literally suffering. I feel sick admitting there are things going on when others are taking needles to the arm and shaking down toxic chemotherapy. Not that I want that for myself, but that I don’t feel validated in my own journey, which is oh-so-yucky to admit. Because it feels self-centered. I don’t expect anyone to understand that. What I expect is for people to forget. Because it’s what’s I want to do.

I take an IDH inhibitor which is supposed to stabilize the cancer. It’s done a pretty good job. At last blood draw, though, my liver is turning toxic. I know this is a side effect and I know what it means is that they will eventually take me off this medicine and give my body time to heal my liver so that I don’t need a liver transplant. I take seizure medications, which make me tired and can mess with my vision sometimes. It’s hard to know if it’s the medicine messing with my vision or just the fact that my left side of my body has some new normals, including learning to adapt to my left side, which I am pretty sure is done learning. I have basically no Vitamin D, so I’ve seen an endocrinologist to help me figure that out. Side effects of no Vitamin D means basically no teeth left and new cavities at every visit. I got a new fracture last time and I need to see the root canal doctor, but I hated that last time and I’ve not called him. I LOVE my dentist. I do NOT love that guy. He’s nice personally, but UGH…anything you have to be that drugged for should not be legal. I take two cholesterol medicines because my cholesterol was 600+ last time I went in. The cardiologists words? “Ma’am, you can’t eat your way to cholesterol that bad…let’s talk about your family history.” I take a medicine for narcolepsy (YEP!!) because ever since surgery, my ability to sleep correctly (and not be incredibly fatigued) is whack.

Supplements? DHEA, Vitamin D3 (50,000 units a WEEK), HRT, a detox for my liver (not sure that’s working) and the occasional heavy metal detox when I get pumped full of contrast every 3 months.

So what’s that doing to me?

I’m literally losing my hair faster than I can brush it. I throw it up on my head because it hides the bald spots. I know it looks stupid, but somehow, it makes me feel less bald. It hides the hideous scars on my head that seem to glare out like huge bald spots. I know I should be proud of these things like I am my stretch marks, but I’m not. This part of me hurts. Somehow, it’s easier to write it here than to ever talk about it (so, don’t ask me, because I’ll cry or I’ll lie to you and tell you I’m fine…)

Aside from the hair loss, I’m quite sure one or two of those medications is messing with my mind. Maybe that’s hormones and me going into menopause, too? That’s the thing – no one knows. We just take stabs in the dark and hope we have answers. I spend my days working and pretending the world doesn’t exist with this stuff and then I spend my nights before I fall asleep wondering if I’m going to lose it all, should I shave it off, will people look at me funny? Will I look like a Shar Pei with tons of fat wrinkles on my skull?

I didn’t like my psychologist (the new one anyway) because I didn’t connect with her. Turns out, you kinda need to connect with them to make the visits work. So, I’m looking for a new one – but I’m not trying to find one for cancer topics because I’m sick of talking about it and having to acknowledge that the 9 million things I’ve done since February 2023 after having part of my brain removed has actually created a new normal that I’m just not willing to accept.

Besides the obvious hair loss side effects, I’ve had to learn how to manage things differently. I am a master of all things random sticky notes in my planner and I have definitely learned that Siri can help me set reminders, alarms, send texts, do notes, open programs, and more. Seriously, Siri is pretty awesome. I’ve learned the importance of fine motor skills and accessible software and how screen readers and text to speech (or vice versa) isn’t just for the visually impaired, but can be used for everything from motor skills to brain injury and more.

My emotions are a disaster and I can’t tell you if that’s me being a woman or if that’s me having brain cancer and literally taking at least 3 medications that have a direct impact on my brain. I cry randomly, I yell more than I cry, and I have these random outbursts of anger I can’t seem to control. If I look at the side effects of just the medications for the brain, the list is daunting:

• Dizziness 
• Headache
• Drowsiness/sleepiness
• Nausea, vomiting, and diarrhea
• Vision problems: blurred or double vision, uncontrollable eye movements
• Coordination issues: problems with balance, walking, or unsteadiness (ataxia)
• Trembling or shaking of a body part
• Weakness or tiredness 
• Nervousness or anxiety
• Back pain
• Loss of appetite
• Stuffy or runny nose
• Dry mouth 
• Severe rash or serious allergic reaction: This can include blistering, peeling skin, mouth sores, hives, itching, fever, or swelling of the face, eyes, lips, tongue, or throat.
• Mental (psychiatric) problems:
  • Depression or suicidal thoughts
  • Hallucinations (seeing or hearing things that do not exist)
  • Aggressive behavior or mania (abnormally excited mood)
  • Confusion or unusual thoughts/behavior
• Heart problems
• Musculoskeletal pain (muscle or joint aches/stiffness)
• Seizures
• Hair loss
• Liver toxicity
• Acute kidney injury
• Diabetic retinopathy 

How is it that you can need medication like this to live, but it can do WAY more damage than good sometimes?

So, when I seem irrational, I’m likely showing way more emotion than I normally do. If I seem extra chirpy and happy, I’m quite honestly barely hanging on and likely just lying to myself (and you) that things are better than I am letting on. There’s no reason to post this other than to just say it to myself and it’s days like today that I’m glad it doesn’t get a lot of traffic on this site. It’s a way for me to say it out loud and for the few that read it, it’s a way for you to get an update on why I’m all over the map. It’s not a way to drum up sympathy because quite honestly, I’ll likely just respond with “LOL.” Because hey, if we can’t laugh… what do we do?

All in all, be gentle with people. Sometimes, people look okay on the outside. But sometimes, the outside is just the shell holding the million pieces together.