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Aging Gracefully Out of AYA

by Dee MasterBladder CancerApril 11, 2023View more posts from Dee Master

At 33 I was hooked booked and totally cooked—not in a good way. I was diagnosed with bladder cancer a month before my 34th birthday. I was chasing a diagnosis for over a year and my PCP sucked. In short, I have really hateful feelings toward her. 

She told me that it’s all in my head; it’s all because I’m a woman! And it’s my uterus! it’s the fibroids! It’s probably the two C-sections you had, and last resort: “it’s your weight” that is causing all this abdominal pain. 

This is where you are your best and only advocate. 

It’s your body, listen to it. Do not second guess it and let the doctors throw you under the bus. 

My lower back was hurting. My belly was hurting, I had stopped wearing jeans. When I peed and wiped, it was pink. My doctor kept sending me for ultrasounds. Never once did she send me for a CT to see what was going on in my belly, and eventually on Thanksgiving 2012, Black Friday was Red Friday for me. I was peeing blood! Of course, I thought it was my period; it wasn’t the wrong hole!

This started my cancer journey. I did not know until 2013 that you could get cancer in your bladder. I had never heard of it. It took me a year to get my diagnosis.

Who ever heard of bladder cancer and that women can get bladder cancer . . . no, my peeps, no! 

From the age of 16, I have had fibroids in my breasts and have been watching them like a hawk! But never in the world would you imagine I would ever think that “Oh, I have bladder cancer.” That happens to old men: veterans 69 and over. 

This is where the fun began . . . Multiple surgeries, cystoscopy every three months, chemo and nonstop torture—basically it’s like you’re being surveilled by the nasty medical FBI. It’s been a tough decade. 

I just thought I was barely going to make it out alive, and I kind of sort of did. I was getting settled into life. Into the cancer life, “the new normal”—it’s new but by no means normal. I have learned to love myself in the now, scars and all. I went over to the dark side and made friends with the new me. 

In 2017 I had a recurrence. I saw my tumor on the TV; it looked like a cute sea anemone waving to me saying, “I’m back, bitch!” My urologist and I simultaneously went, “Holy shit!” and then, of course, 2018 was a hysterectomy as my uterus was going to shit! Everything in my body was slowly retaliating. I felt they were saying, “All right, we quit!”

We just want to be rebellious! Mass produce an excess amount of shitty cells and have a drunk teenage party that is going to cause havoc. 

Well that was a scary rollercoaster ride, and I never want to be in my 30s ever again. Welcome, 40s. And of course, the “sideffucks” continue, and I’m dealing with various other things. 

I never thought I’d make it past 35! 

Here I am . . . 40 fucking 6! Made it through kicking cancer’s butt!

I now realized apparently I have grown out of the AYA cancer community. I don’t think I have, actually—my mind is still young, though sometimes I feel it’s a million years old. I think of myself as an “Old OG cancer gangster” that is here now to guide the young ones, show the AYA community the light, tell them that the force is strong and you have to look for it in the right spaces . . . be their YODA! Or their Mama Bear (take your pick).

Yup! I’m full of myself—it’s an “after-effuck!”

I’m now aging gracefully out of AYA! Though I did panic, parts of me felt abandoned and the childhood insecurities of being left behind and losing my friends came up like a whirlwind. I went to the rage room (highly recommend it), called my favorite humans, talked, cried, vented, took a trip into my dark gloomy abyss, and stayed there for a bit. It was awfully comforting—all your emotions are valid and need to be felt.

Then I thought, “Hey! Age is just a number.” My humans love and support me no matter how old I am. They can learn from what I have been through. I have a lot of cancer and real-world wisdom (promise not to dish it out unsolicited). I’ve had a lot of therapy since I went through a lot of trauma and some effing PTSD. (Believe me, cussing really helps, OKAY!) 

This was my safe space. This community has been there for me since my second diagnosis in 2017. The only decent part about “joining the club nobody wants to be in” is the humans in this community. You know who you are, and I love you to the moon and back. 

Cactus Cancer, formerly known as Lacuna Loft, gave me a home and the security of being myself, allowing me to be vulnerable, scars and all. They saved me a space, always welcoming me. They helped me deal with every upheaval cancer threw at me. 

Then came Elephants and Tea. 

My tribe . . . they are “DEElicious” and I now know that even though technically I’m aged out of AYA, they have my back. They love this old “OG cancer gangster” that is here now with a mission to guide and support the young ones. So they can learn from what we have been through. Feel free to pick this chemo brain! I’m learning to gracefully and sometimes not so gracefully deal with the “sideffucks” (cussing is cathartic, you should try it).

Reach out to your humans, new and old—ask for help and communicate your needs. The AYA community is abso-fucking-lutely amazing! They are here to support and guide you through this horrible murder mystery called cancer. 

Somedays I still feel a bit scared. What if the cancer returns? It’s like the sword of Damocles constantly hanging over our heads. Other days I’m a bit whimsical but most times sarcastic and dark. It’s not a bad thing! 

Humor is my coping mechanism. It helps to make this life I’m living fun. I’m grateful to be here and realize through this process that positivity is highly overrated. You can’t have a rainbow stuck up your ass 24/7 (it hurts).

It’s okay not to be okay. You and I have this amazing community. The support and love they give you are unconditional. I have felt it and that’s one of the big reasons I have managed to make it this far and infuse some fun into this mundane chronic pain-filled life. 

I now celebrate every little joy—birthdays are big!—and every little win. 

I highly recommend making a big deal out of everything, cause you’re a big deal. Enjoy the time you have in this universe. 

My wish for you all is may all your scans be benign! 



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