We asked for questions. The kind people don’t usually say out loud.
Some were about me. Some were about Pete. Some were about things people are curious about but don’t know how to ask without feeling like they’re crossing a line.
So we answered them. Honestly. Not perfectly.
Because this doesn’t feel perfect on our end either.
This is what it looks like from both sides of it. Not just the person living in the body, but the person standing next to it every day.
Pete’s Questions
What was the moment it hit you that this wasn’t temporary?
We have had a couple of occasions where things looked positive but quickly turned around. She’s been sick since we got married and this is the way it will be for the rest of time together.
What scares you the most right now that you don’t usually say out loud?
I think the most obvious answer would be having to on with life with out her should she pass before i do.
Do you ever feel like you have to be the “strong one” even when you’re not?
Im a man . We are always supposed to be the strong ones. But she is way stronger then me or anyone I know
What does a hard day actually look like for you, not just for her?
Just trying to keep my mind busy to keep the word cancer out of my head for a little while
What’s something you miss about life before all of this that you feel a little guilty admitting?
We spent a lot time out riding motorcycles everywhere. That just doesn’t happen much anymore and certainly not for any lengthy period of time
What’s something people assume about being with someone sick that’s completely wrong?
People think that a cancer patient ringing the bell at the hospital means they are cured and beat cancer. For the record it just means that they finished their last round of chemo or treatment plan. Which is wonderful if your are someone that is blessed enough to only have to do one line of treatment. She has been able to ring the bell and then find out the cancer spread or the line of treatment didn’t work.
Be honest… what’s your most used phrase lately?
“WTF!” or “Can we just have one day with anything positive!”
What do you wish people would ask you instead of always asking her?
Everyone always asks us both anyway. It’s always how she is feeling. Pretty much the answer is always like shit but there are the days she just feels a little less like shit
What’s something she does that she probably doesn’t realize means a lot to you?
Heres something that may sound so small and ridiculous but means the world to me. When i come and i am on the motorcycle by the time i get to our street she opens the garage door for me so I can just pull right in. Ive never been with anyone who does stuff like that for me. If you have seen the movie a Bronx Tale, Izzy is the one. Shes the one that reaches over and unlocks the car door for me after i held the door for her,
How has this changed the way you think about the future?
It doesnt. We live every day one day at a time. Traveling and doing somethings arent possible to do anymore, Walk around amusement parks, flying on airplanes etc
What’s the hardest part about watching someone you love be in pain?
Not being able to take it away from her. I would gladly take it all from her if she didnt have to hurt anymore
Do you ever feel like your needs get pushed to the side?
No. Never. As sick as my wife is she takes care of me even more then i do
What keeps you here on the really heavy days?
I love her. Life could be way easier in another situation but shes my wife and I will never let her down or walk away. Shes had way to much of that in her life by everyone else but it will never be me.
As someone on the outside looking in, what symptom of hers is the hardest for you to watch?
The non stop vomiting to the point she cant even catch her breath. It the escalates to the migraine
What was something about her pain or fatigue that you didn’t fully understand until you saw it up close?
Shes dealt with cancer for a while now. For the first year or two it is terrifying to watch someone you love hurt or be sick. She does very well to try to hide it or ignore it. But as a person on the outside having to watch and not be able to take the pain away sucks! It just fuckin SUCKS! Then you try to talk to friends or family or anyone and I think you expect to get empathy or subconciously want them to feel as sad and hurt as you are for her like I do but the truth is no one will ever feel how I do towards my wife< the only way they will ever know is if its someone they love and they have to go through it with their person. I pray no one else has to deal with it ever.
What do her “bad days” actually look like from your perspective?
Bad days, at my wifes level, are incredibly difficult to deal with. There are days that mean non stop vomiting ( or coming out of both ends so I have to have a bucket in front of her while she sits on the toilet) which cause severe migranes. So I put an otomen, or build a pallet out of couch pillows, for her and get her ice gel caps to put on her head to try to help with her head hurting. Sometimes this goes on for 3-4 days in a row. Not being able to eat and getting so weak. It sucks, its the worst thing. Nothing helps you just kind of have to wait for it to be gone. Caffiene in a bottle of Coke helps when shes able to start keeping stuff down. Toast is the next step.
How would you describe her fatigue to someone who’s never seen it firsthand?
She is the queen of napping. Rightfully so and understandable. I think because shes been going through this for so long she just keeps pushing herself through day to day lifestyles. She’s the strongest person i know and it brakes my heart that she has no alternative but to be strong.
Have you noticed patterns in her symptoms or moments where you can tell she’s about to crash before she says anything?
The migranes kind of just pop up out of no where and thats when i know shes going to be down for the day.
What’s one small, random thing that still makes you laugh no matter what kind of day it is?
My wife is very grafeul (complete sarcasm here) so she is forever doing clutsie things on accident which is why I call her Grace quite often
Izzy’s q and a
What does a “bad day” actually feel like in your body?
It feels heavy before I even get out of bed. Like my body already decided we’re not doing much today and I just have to accept it. Everything aches in a dull, constant way. My stomach feels off. My energy is gone before I even use it. Even small things feel like too much.
What scares you the most right now that you don’t usually say out loud?
How unpredictable this all is. Not knowing how I’m going to feel tomorrow, next week, or how fast things can change. And how much of myself I might keep losing along the way.
Do you ever feel pressure to be the “strong one” even when you’re not?
Yeah. All the time. Even if no one says it directly, it’s there. I feel like I’m supposed to handle this well, stay positive, keep going. And some days I just don’t have that in me.
What does a hard day actually look like for you from start to finish?
Waking up already tired. Sitting there for a while trying to figure out if I can even get up. Maybe forcing myself to eat something, maybe not. A lot of laying down, scrolling, watching TV, just trying to exist without making things worse. Feeling guilty for not doing more. And then going to bed hoping tomorrow is a little better.
What’s something you miss about life before all of this?
Not thinking about my body all the time. Just existing without constantly checking in with how I feel. Having energy without planning for it.
What’s something people think helps but actually doesn’t?
“Stay positive.” It doesn’t fix anything. It just makes me feel like I’m supposed to hide when I’m not okay.
Be honest… what’s your go-to phrase lately when you’re over everything?
“I’m just tired.” And not just physically. Just all of it.
What do you wish people would understand without you having to explain it?
That I’m trying. Even on the days it doesn’t look like it. Just getting through the day is sometimes the effort.
What’s something small that means a lot to you now?
A day where I can sit outside for a little without feeling wiped out. Or just feeling normal for an hour.
How has this changed the way you think about your future?
I don’t think as far ahead anymore. It’s more about getting through what’s right in front of me.
What’s the hardest part about being in your body right now?
Not being able to trust it. I never know how it’s going to feel or what it’s going to let me do.
Do you ever feel like you’re letting people down when you can’t push through?
Yeah. Even when people say I’m not, it’s still there in my head.
What actually helps, even just a little, on the hard days?
Not being expected to be anything other than how I am that day. And just having someone sit with me without trying to fix it.
What keeps you going on the really heavy days?
Honestly, some days it’s just getting through the day. That’s it. No big reason. Just keep going.
What symptom hits you the hardest, physically or mentally?
The fatigue. Because it affects everything. It’s not just being tired, it takes away what I can do, how I feel, everything.
What does your fatigue actually feel like compared to just being “tired”?
It’s heavier. Like my body is weighed down and doesn’t respond the way I want it to. Rest doesn’t really fix it, it just slightly resets it.
What do your “bad days” really look like that people don’t see?
A lot of laying there feeling uncomfortable in my own body. Trying to distract myself. Trying not to spiral. It’s quiet, but it’s a lot.
What’s something your body does now that caught you off guard?
How fast I can go from feeling okay to completely drained. There’s not always a warning.
Are there moments when you know you’re about to crash before it happens? What does that feel like?
Yeah. It’s like everything starts to feel a little heavier and slower. I can feel my energy dropping and I know I need to stop, but sometimes it’s already too late.
What’s one small, random thing that still makes you laugh no matter what kind of day it is?
Mojo. Just the way he is. He doesn’t care what kind of day I’m having, he’s still going to be himself and it pulls me out of it a little.
There isn’t really a clean way to wrap something like this up.
This is just what it looks like. Some days heavier than others. Some days quieter. Some days we handle it better than others.
If you’re in this, whether you’re the one going through it or the one standing next to someone who is, I hope this made you feel a little less alone in it.
And if you’re here trying to understand, this is as close as we can get to explaining it.
Thanks for being here. For reading. For staying.
If you want to keep following along, everything is here—more blogs, ways to support, and ways to stay connected:
https://mojoandthemess.com/
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