I haven’t had the words to explain my current reality – partly because it’s hard to accept it myself. Or maybe I have the words, but I don’t have the courage. No that doesn’t seem right either, so I’ll try my best to do what I used to do on here and just say it without edits or filters.
Right now, I am trapped in bed most days. When I stand, my body acts like it’s just run a marathon. When I change positions, my heart rate can jump 60–70 beats a minute – that’s before I’ve even tried to walk. I am so out of breath, my body feels like it’s been through a traumatic accident. I guess it has, or rather does, each day.
I dressed up as pheo vs fabulous ‘Barbie’ for Halloween, really I was dressing up as myself but was too sad to say that.
Because I miss her so much.
Imagine being so far away from your true self that it feels like a costume…
Sitting doing my makeup, my hands tremble, my heart bangs in my chest at 165 BPM despite being so heavily blocked on heart and blood pressure medicines. (average person’s resting HR is 60-80bpm). I try to cover the painful flushing on my cheeks so no one will look at me with worried eyes.
My pupils are gigantic from all the adrenaline my tumors are pumping out. I can’t stop sweating but the window is open. My body won’t stop twitching. I have to go lay down and initiate my survival guide
Oh boy, I’m too nauseous. My vision is doubled. I’m mentally numb but my body is anxious, it feels like I’m being squeezed too hard, like my organs are too big for my body. Why won’t my heart slow down? God I am so uncomfortable. Maybe I should stay home, I think this might not be…
NO, these cancer support meetings are something I really look forward to. Being around people, what a privilege to be around energy and LIFE outside my bed.
The state I’m in could be someone’s worst possible day of their life – a singular event. A crisis. But it’s my daily reality, multiple times a day.
I used to think that was just my normal, that because it’s a terminal illness I’d live like that till I die. What more could I expect?
But I proved that’s wrong, that we can LIVE and find some stability.
And knowing that, knowing how good it can get, well that taunts me every single day. It reminds me not to accept just because of the label I didn’t ask for.
I’m back to that place where just existing is dangerous, and daring to do ANYTHING is like Russian roulette.
If I sit up in my living room or anywhere outside my bed, my circulation and lymphatic system scream in pain. Where over 100 lymph nodes were removed in my neck, I feel it all day, every day – it burns, it’s swollen, it’s tight, heavy, and full. Like hands are on my neck and face strangling me while my nerves unexpectedly ping and jab. The numbness preventing me from wearing clothes or hair that touches it.
I have to wear a tight lymphedema garment on my face and neck every day. So I have to wear a silk sleep cap in the day time to protect from the harsh velcros. Making it impossible to wear a wig or let my head breathe. I’m hot, itchy, and constantly uncomfortable.
How can I feel like myself? I am hidden away all day long because I don’t want be seen like this – I shouldn’t have to.
I’m not even skimming the surface of what a day entails, and all the things I know are possible to improve it.
It’s gotten to the point where even sitting is excruciating. I have to plan my sitting time, time it, and budget for it – just like I have to budget my energy.
When I get a rare burst, it comes with so much adrenaline like I’m operating with a gun to my head. Everything is rushed and frantic because I never know when I’ll be afforded that bit of time again. And what do I do with that bit of energy? I unload the dishwasher. I clean my kitchen. I try to cook a meal. Because at this point, I’m not chasing something extravagant – I am begging for stability, normalcy, and familiarity.
But that feels so far away right now.
I’m no stranger to pain, bad news, to impossible odds. But I also know, deep in my bones, when there’s more that can be done – and this is one of those times.
I’ve stopped sharing the full extent of my suffering long ago. Imagine naming your worst moments all day, every day, for eleven years. It would break anyone.
But I also know that if I want to survive this current chapter, I have to be honest about how badly I need help.
I’m not trying to cure these cancers. I’m trying to give my body the support it needs to be able to keep fighting them. And that’s the hardest part, because most people have a timeline, a finish date, they come out the other side.
But the fight IS my life, and always will be, my other side may look different and I may not have a finish line but I’ve always shown we still deserve to live fully and fabulously. With dignity, respect, and some peace at times.
I know my disease(s) are rare, incurable, complex – but I’ve spent a decade proving what’s possible for all of us despite that. But right now, I need to be the one who’s rallied around.
I need care that goes beyond what’s currently available to me here – care that I know will be life-changing.
I just can’t reach it alone.
If you’ve ever believed in me, in what I stand for, and you’re in a position to do so – please, help me get there. 🤍
Endlessly grateful to the 97 of you who have gotten me closer to getting the care I need – so that one day I can be Miranda again
I love you all.
Pheo vs Fabulous 