Meet Michael Cramer: AYA Hepatosplenic T-cell Lymphoma Survivor

We spoke with Michael Reid Cramer, an author, social media influencer, motivational speaker, and AYA hepatosplenic T-cell lymphoma survivor. Read on to learn about why he started sharing the story of his rare cancer experience online, how he's getting back into fitness and exercise as he continues to heal, and how he maintains his mental health as a young adult cancer survivor. 

What is your cancer story?

When I was 19, I was home from college during the COVID lockdown. March 2020, I started to feel tired for months. This feeling dragged on. Before all this, I was an athlete on the Olympic development team for windsurfing. I was always in the gym and active alongside studying at college, but now I could barely get through the day.

Maybe the lockdown was making me depressed. The beach was my favorite place in the world to be, but they were closed. I would skate to the beach daily just to see it, but couldn’t go on it. I didn’t feel like myself for months. I tried to find any reason for my exhaustion.

From March through July, I developed light night sweats. By June, I concluded that something was wrong. I didn’t feel like myself at all anymore. I thought it was a negative mentality thing at first, then moved to the possibility of having COVID previously or being anemic. We visited my pediatrician who did bloodwork, and then suggested that I meet with a specialist at Nicklaus Children’s Hospital. The bloodwork didn’t look good, something was definitely off.

At Nicklaus Children’s Hospital, I met with a hematologist and oncologist. I thought I was just anemic, cancer hadn’t crossed my mind. I thought the doctor would hand me some supplements. I wasn’t severely sick or dying or anything. I just felt tired and had fevers and night sweats. The doctor returned after reading my bloodwork and asked me and my mom to spend the night in the hospital. We asked him if we could leave and come back the next day for my bone marrow biopsy, and he allowed us to do that. 

We returned the next day and I completed the bone marrow biopsy. The doctor told me I had leukemia / lymphoma. Immediately, I was taken to the oncology unit on the 6th floor of the hospital. I had a port placed the next day and was going to start chemotherapy, but then everything stopped. We sat for a week in the hospital with no answers on my official diagnosis. They sent us home “We’ll call you when we have an official diagnosis.”

The doctors called us every few days, but they didn’t have any answers for me. I went into the hospital for more bloodwork and was put on dexamethasone to try to treat whatever cancer I had. Three weeks later, I received the call. I had hepatosplenic T-cell lymphoma, a rare and aggressive cancer that attacks the liver and the spleen. Doctor De Angulo at Nicklaus Children’s told me that my only chance of survival was to do two to six rounds of chemo, and then a bone marrow transplant. 

On October 27th, 2020, I received a bone marrow transplant from a donor in Germany. It was a 10 out of 10 match. I spent six weeks in the hospital receiving total body irradiation, lung blasts, radiation, and chemotherapy. This was one of the most difficult times of my life. The transplant was physically probably the hardest thing. I vomited a lot and felt pain all over my body. The doctors put me on a PCA pump for morphine. 

The worst part was that I thought I would be fine after the transplant. I thought I was going to go back to surfing, back to my regular life. But instead, I developed Graft Versus Host Disease (GVHD). For the next two years, I was in and out of the hospital with my mom. She’s my caregiver and never left my side. She’s amazing, I give all the credit in the world to her. My GVHD was very life-threatening for a very long time. It was extremely bad for my liver, which was failing at one point leading to a months-long hospitalization. I almost didn’t make it a few times. 

Now, I live with chronic Graft Versus Host Disease. I’m still in treatment, just not chemotherapy.

How did having a rare form of cancer make your journey different?

My treatment was very intense. The chemo and radiation I had was more intense than the average cancer treatment. The doctors wanted me to reach remission ASAP, and they did not mess around. I read other transplant stories, and not to compare, I feel like some of their transplant experiences were a lot easier than mine. My cancer was always difficult. The chemo, the transplant, everything made me so intensely sick.

At the same time, I’m blessed that I had a rare cancer because they treated me like I had a rare cancer. The doctors looked at my body as a whole, not just my cancer. They paid attention to me and did the best they could to help me survive this rare cancer diagnosis. There was no road map for treatment, they just wanted me to get into remission and get my transplant as quickly as possible for the best chance of survival.

Where are you now in your cancer journey?

I’m in remission, but I hate saying that I’m in remission. I don’t ever want to brag about it.

Currently, I’m doing a treatment called ECP and taking immunosuppressants while getting blood work every two to three weeks to watch my Graft Vs. Host Disease, so I haven’t done an official scan specifically for cancer in a long time. I’m always in the hospital with very rare breaks, and they’re trying to limit the extra radiation I’m exposed to from scans. 

The goal now is to lower my treatment frequency. We never really know with GVHD because it can flare up at any time. With how things are looking now, hopefully, more decreases in the future and more freedom. My journey was very tough. It was not easy, but I'm just blessed that I'm here. 

Mental Health and Cancer: Let's Talk About It.

I have struggled immensely with mental health over the last few years, as every cancer patient and cancer survivor would. I often do things to help my mental health. I go to therapy, I have a psychiatrist, I play guitar, I work out, and I meditate every single night. I write in a virtual journal. It's on my computer, another tab in my Google Docs, but I've been writing in it ever since I was diagnosed. That's actually how I wrote my book.

I published a book a few months ago, filled with what I wrote in my journal every day since I started chemo. I was like 'Okay I'm gonna put this into a book'. And I wrote a book. That's something that helped my mental health, too, is having a purpose. Do something that allows you to focus your mind on something to help others, you’ll be surprised at how much it helps. 

How have you restarted your fitness journey?

Fitness is huge for me. But it's different now. I have necrosis from the steroids and my elbows and knees are the worst. So lifting weights above like 7 lbs is really difficult. That's usually my limit. I would do a lot more if I could, but it just hurts my elbows so much.

Physical therapy has also allowed me to get some mobility back. I will work out every single day that I'm not in the hospital. I can't achieve the same physique as before, but I don't care. I just work out to feel good every day, probably for about an hour. It's very important to exercise, not just for your physical health but for your mental health. I feel so much better, so much more relaxed, so much more grounded after I finish a workout. It just sets the tone for the day really.

I just had my knee replaced. I've finally started to do more legs 'cause now I can actually do squats and go on my stationary bike. For the last two years, I really haven't gotten to work on my legs at all. Now, I’m slowly starting to build up strength.

Before my knee replacement, I was able to go in the water a little bit when I didn't have treatment. With my treatment, they use big needles to access my port. I need to take a week off of treatment to go in the ocean and I can't get sun. I have to have like the perfect storm to go surfing. It has to be six or seven PM when the UV is like two or one. I have to have a week off of treatment. There have to be small waves too. Then I have to actually get to the beach. So it's very rare.

The goal with the knee replacement is that I will be able to surf again. I just have to wait for my knee to heal because I don't have the range of motion to really push up on a board and stand up yet. My treatment is reduced every three weeks, so I have about a week of a window where I can go in the ocean now!

Why did you start meditating, and how does it help you?

Meditation started for me in high school. I always dealt with a little bit of anxiety my whole life. I decided to start meditating and it transitioned into my college life. When I was in college and then when I was diagnosed, I kind of stopped meditating. When I was diagnosed with cancer, when I was going through chemo, I was so tired that I could just fall asleep without meditating. 

Now, I've realized it's important just to do it regardless of whether I can fall asleep without it or not. It's just a good way to end the day and it helps you calm down. I do it every night before I go to bed, just a 10-minute guided meditation. Something like a gratitude meditation, just to try to be grateful and look back on the day and look at the good things.

It helps a lot. We go through the day and we are always so busy just doing a million things. It's good to have a review of the day and try to be conscious of what we've been through and how we can be grateful for the things that we have in our lives.

You share on social media how important love is, what does love mean to you?

Love is just like family and friends and prayers and like a community of people. I've had so much love because the nurses have been so lovely. My mom, my family, my grandma, my sister, my brother, everybody in my life has been so loving. I'm just really lucky that my friends have been so supportive too. And to me, that's love.

That's what's really gotten me through everything and still keeps me going is the love around me. Really, it's the most important thing. Those relationships with people are everything.

Why did you start a podcast with your mom? 

We started Michael and Mom Talk Cancer in 2021 around August when I was dealing with GVHD, but it wasn't that bad yet. We were able to do a few episodes and then when it got bad, we had to stop. We just started it because people wanted to know more in-depth what we were going through. We also always have a million questions from family and friends as to what's really going on and we didn't have much time to give them a precise answer. We kind of wanted people to just like be a part of the journey and hear it through lengthy voice messages, which was our podcast.

Initially, we just wanted to do something fun to keep ourselves entertained. And it just became something where we now interview cancer patients and cancer survivors, and it's it's just a great outlet.

I think for us, it's kind of like our own therapy in a way. It's cool. It gives people both valuable lessons and hope. 

Have you been able to connect with other young adults in the cancer community?

There's a lot of stuff online, like there's an app Cancer Buddy. They connect people to one another. Also Instagram and Tiktok, just like look up #cancer and just like reach out to people.

There's a huge community online of Adolescents and Young Adults with Cancer (AYA) at hospitals. My hospital has an AYA program, so that is also helpful. I actually met a good friend of mine in the hospital. We were both having transplants at a similar time and we actually hung out recently. When we hung out it was really crazy to be out of the hospital. We went to dinner and played pool like regular young adults, but we had experienced being so sick in the hospital together. Now we were both out of that space, still alive, and still friends.

What message do you have for others in the cancer community?

My message for others in the cancer community is: It's tough. Cancer sucks, but there's so much support out there. There's so much to live for. There are so many new treatments.

Honestly, sometimes it feels like the world is ending and that cancer just consumes your life. But it does get better. It can get better. And if you need someone to talk to you, reach out to me. I lead a Discord support group.

Connect with Michael on Instagram @michaelreidcramer.