Cancer Survivorship Q&A| YMyHealth

Mikaya Franklin was diagnosed with medulloblastoma, a type of brain tumor that forms in the cerebellum and affects balance, coordination, and movement. Now three years into survivorship, she recently earned her master's degree in biology and is pursuing her dream of becoming a physician assistant. In this candid conversation, Mikaya discusses the realities of cancer survivorship that often go unspoken, from the ongoing medical appointments to the mental adjustments of living with an "invisible illness."

What has become part of your regular routine three years into survivorship?

Mikaya: I still get MRIs every three months, which is frustrating because I'm tired of getting them. They give me anxiety—being in the machine for almost two hours, having to stay still. It's fine until it gets closer to two hours, and I'm like, "All right, that's enough. Get me out."

I also live with what I call a "double consciousness." I'm still doing everything I want to do—going places, doing things—but I'm always thinking: If I go to this place, where's the closest restroom? Are there going to be stairs? How's the ground going to be? Is it grassy? Am I going to have to carry something a long distance? I'm not going to show it, but it's always a thought.

What physical adjustments have you had to make?

Mikaya: I used to be right-handed. Now I'm a left-handed person. I write with my left hand, do most activities with my left hand, carry things with my left hand, and brush my teeth with my left hand. I can use my right hand, but it takes so long, and sometimes it's not accurate. If I'm trying to brush my teeth with my right hand, the brush ends up on my cheek, so I just use my left hand most of the time.

I also have a knee-ankle-foot prosthetic that I call "Bionica"—like the Bionic Woman. It helps with the hyperextension in my knee because my whole right side was affected, and some muscles atrophied. I'm supposed to wear her when walking long distances, running errands, or hiking.

How do you stay motivated with physical therapy and exercise?

Mikaya: I came up with what I call the "two G's": guilt and grace. You have so much guilt knowing what you need to do and not doing it. You think, "I could be so much farther along if I just did it." But you also have to give yourself grace, realizing you have come a long way. Just last week, I couldn't wear shoes without ankle straps. I needed them contained to stay on my foot. As of two weeks ago, I'm wearing slides without ankle straps, and they're staying on my foot. You have to balance between the two G's.

How has survivorship affected your friendships and social life?

Mikaya: From my perspective, my friendships haven't changed. For example, my friend asked me to be a bridesmaid in her wedding in Houston, so I traveled there and did it. I'm not letting this stop me from being social and being part of other people's lives.

But from my friends' perspective, I don't have cancer written on my forehead, so it's not something people bring up all the time unless I mention it or post about it. They might randomly say, "Your walking looks good," but they're not talking about the little incremental pieces.

Has this affected your mental health?

Mikaya: It's very frustrating to be in public spaces with people who are "normal" when I'm not "normal." For example, at a concert, when you have to squeeze past people in a row, I struggle with that and sometimes have to hold onto people's arms for help. Having that be the first thing people see about you decreases your self-confidence a little bit. I've had people ask, "Why are you walking like that?" or "What's going on with your knee?" It is upsetting, but I don't let it get to me because I can't control it.

How has your perspective on the healthcare system changed?

Mikaya: Initially, I put 100% of my faith in the healthcare system. They're going to figure this out; they know what's best. Now I feel differently because there are so many things I wasn't told that I had to figure out for myself. I feel like I'm the expert when I shouldn't be.

The biggest issue is with insurance coverage for physical therapy. I only get 40 sessions a year with Blue Cross Blue Shield. Who are they to tell me I only need 40 sessions? What happens if I still need therapy after that? When therapists say "just pay out of pocket," they don't realize how much a session costs when you're going two to three times a week.

I've had to become my own advocate and play the game. I have two insurances now—when Blue Cross runs out, I switch to UnitedHealthcare with a different provider. I know what I need, so we're going to figure out how to get it.

What do you think people are missing about young cancer survivorship?

Mikaya: For individual support, it's pretty good—there are support groups out there if you want them. But I wish I were more informed about the science behind everything without having to ask. Sometimes, even when I asked, they didn't know.

On a larger healthcare scale, the coordination of care is not good. Doctors say they put things in your chart for other doctors to see, but just because they can see it doesn't mean they look at it or incorporate it into their care for you.

A lot of what happened felt haphazard and reactionary. For example, with fertility preservation, I wasn't told in enough time and had to figure out for myself that I needed to get my eggs removed before chemo. Or when a nurse randomly asked months into treatment if I was sexually active because I should abstain to avoid giving chemo medicine to my partner. Nobody wanted to tell me that four months ago, when I started?

There should be explicit information about what patients should know. If you have medulloblastoma, here are potential side effects, like posterior fossa syndrome, which affects speech and emotions. There are things they just didn't say that could have been beneficial.

Mikaya with her sister and brother on a cruise during summer 2025.

What's next for you?

Mikaya: I'm writing a book to share my story and hopefully let people know they're not alone. I want to highlight things to look out for that I didn't know going into this situation.

I'm also taking anatomy and physiology and medical terminology classes to apply to physician assistant school next year. I'm tutoring first graders, which is so cute because they need a little help.

Physically, I hope to be back to skating, dancing, running, jumping, and going up and down stairs with no issue. I'm very excited about what the future holds.

Want to hear more from Mikaya? Check out the YMyHealth podcast on your favorite streaming platforms and YouTube!

Mikaya can be reached on Instagram @mikaya.renae, TikTok @mikayafranklin, or Facebook at Mikaya Franklin. She welcomes messages from others going through similar experiences and loves connecting with people who reach out.

Cancer Survivorship