Meet Michele Hundley | Acute Lymphoblastic Leukemia Survivor

We catch up with Michele, a 10-year Acute Lymphoblastic Leukemia survivor, and winner of an IHadCancer Blogger award in 2016! See how both she and her mom fought (and survived!) cancer in 2014-2015, and how she's doing now over 10 years out from her initial diagnosis.

What is your personal cancer journey?

Michele: I thought cancer was something that only happened to other people. My mom even had breast cancer for the first time when I was nine years old, but I still never thought it would touch me. For some reason, I thought I was invincible. 

In January 2014, I was diagnosed with Acute Lymphoblastic Leukemia/ALL at 30 years old. (Just celebrated the milestone of 10 years since my diagnosis this year!). At the time, I was in the best physical shape of my life and lived a super healthy lifestyle. Still, cancer came for me. 

Initially, I was given a less than 10% chance of surviving into 2015. Later, I received test results saying I was pH+ (Philadelphia Chromosome Positive). I would need a transplant just to survive. Without one, I would die. I remember hearing that news and having the first panic attack that I’d ever had in my life. I didn’t know what was happening to me. I felt like I was going to pass out. 

The bad news just kept coming. After my transplant, there was “about a 0% chance” that I would be able to have children. My then-husband and I had just started trying for children in late 2013, so this news was crushing.

My treatment plan continued through countless blood transfusions, spinal taps, and aggressive chemotherapy. I started with PICC lines, then to a trifusion line and a port. 

So quickly, my life had gone from being normal to being flipped upside down. I had no time to think about anything. My family and I joked about me being a Gremlin. There were countless rules that became part of my life because my immune system was so compromised.

Be The Match worked with me to find a donor for my transplant. I’m Caucasian, young, and female. Statistically, I should have had no problems finding a donor. Unfortunately, the doctors discovered another weird gene of mine. This made it impossible for me to find a donor. There were 25 million people in the Be The Match registry at the time but no match for me. 

I completed chemotherapy and my body seemed to take that initial treatment. In mid-2014, my leukemia relapsed. I still hadn’t been able to find a donor for the transplant I desperately needed. My doctor put me on a strong chemo drug that put me in remission. It was a race against time, so my doctor decided to try a riskier transplant. I received a double cord blood transplant. This type of transplant requires a longer recovery time and was much harder on my body. Due to my age, it was a viable option for me. I’m so thankful my doctor made that decision.

After my transplant, I spent 30 days in the hospital. When I left the hospital, I still had to take 50+ pills every single day. My mom was my primary caregiver and I have no idea how she kept up with it all. The first 100 days after this transplant are crucial and is the first milestone. I still had to keep traveling to the clinic three days a week for treatments, blood transfusions, and platelets. I also had to do inhalation treatments for my lungs and CHE-IVIG treatments for my immune system. 

I spent a total of ⅓ of 2014 in the hospital. That whole time is just a blur in my memory. 

With a double cord blood transplant, your immune system starts from scratch again. I had to redo all my baby shots. In 2015, I was diagnosed with Graft Versus Host Disease of the digestive tract. That was rough. I dropped to 88 lbs and my family had to call 911 regularly for me. I couldn’t keep anything down and was extremely dehydrated. Before cancer I struggled with stomach issues, but this made everything so much worse. 

In the Summer of 2015, my mom was diagnosed with Stage III Breast Cancer. Talking about all this doesn’t even sound real. 2015 was a very dark year for us. I lived in my house with my parents, and my mom was my primary caregiver. I was still so weak when she started her cancer treatment. We tried to help each other as best we could, but it was a hot mess. For levity, we tried laughing at the situation. Somehow, we both made it.  

When you’re in the thick of cancer, it can be hard to see the light. You never think the pain will end. Life while fighting can be very disheartening. However, to be on the other side and look back? I don’t know how we managed, but we DID IT. 

I forgot some of the most painful moments due to chemo brain and the actual trauma of leukemia. However, the brain fog doesn’t really go away. I still struggle to remember many things. What happened yesterday? What was that movie I watched the other day? What is my name? Just kidding. That I remember.

What are some of the physical and emotional challenges you faced?

Michele: During treatment, I faced: constant weight fluctuation, hair loss, and horrible body rashes. Steroids made me swell up so much. One morning it looked like I had an extra stomach because of the fluid buildup. The steroids also gave me a “moon face.” My family and I joked that I was a bobblehead. My body was so skinny while my face was round. 

Emotionally, I was a hot mess. I was trying to be positive but I was very sad and depressed. When my mom was diagnosed, things got extremely rough. Laughter helped to keep us motivated. My mom and I would spend our time watching bad B-movies like Sharknado. They’re bad, but they keep you laughing! The Walking Dead was really popular at the time and we would have marathons. We could relate to all the catastrophic things happening to the characters. We learned life can still be beautiful even while going through a tragedy.

Therapy began around this time and was much needed/ Being able to have someone to talk to outside my family was very helpful. You don’t feel like you’re burdening your stressed-out family when you need to talk about some of your darker thoughts. Someone else can hold that space for you.

My ongoing cancer journey has been a lot. Luckily my GVHD improved, but my digestive system still feels the effects of it regularly. I have chronic kidney disease after constant steroid use. I struggle with migraines and high blood pressure. My mental health is still questionable. Those are the main issues I deal with daily and I’m still on a bit of medication. 

How did cancer start to shift your relationships with friends, family, or significant others? 

Michele: I started my cancer journey married and it sadly ended in divorce. I won’t go into that too much because honestly, it's a very painful part of my past. Suffice it to say, not all partners can handle cancer.

As for my mom, there are no words to describe how much I love her. We were already close before my diagnosis. After my diagnosis, she became my primary caregiver. She did everything for me. In the beginning and at my weakest, she would bathe me daily. I credit my life to her and my brilliant doctor. He took risks to provide me with the treatment I needed to stay alive, and I thank him for that. 

People say having cancer is a marathon, not a sprint. Some cancers take a long time to heal after treatment. I found that most people aren’t built for that kind of a long haul. I received a ton of support initially, and then it dwindled over time. No matter how difficult our situation was, we understood. Everyone had their own lives, families, and careers. Life goes on. For us, our life consisted of hospital stays, constant clinic visits and neverending doctor appointments. My life stopped while I watched the world go on around me. That was a very sad feeling.

After I grew healthy enough to leave the house, it was very hard to walk back into society. Many things seemed superficial to me. I struggled with small talk and “fitting in.” After spending years in the hospital or being sick at home, the world felt very different from what I remembered. I felt like a misfit and to this day, I’m still trying to figure out my place in it all. I still struggle with the reality of not being able to have my own children on a daily basis. It’s hard to be around people who have kids, even 10 years later. Some people think that it’ll get better with time, but that’s a hurt that you never quite get over. Relationships have changed because of leukemia.

I grew up in Virginia. I remain close to my childhood best friends. We’ve kept in touch all these years and I love them dearly. They supported me from afar while I had cancer, and we just celebrated a joint 40th birthday bash in Greece last year! 

How has your perspective on life changed after cancer?

Michele: Before cancer, I had rose-colored glasses on. Now, there are things I will not overlook.

I’m learning to say no more because I was very much a people pleaser before cancer, to my own detriment. I never wanted to hurt other people’s feelings. Now, I’m starting to look after myself a little bit more and do what’s best for me.

I’m no longer OK with settling in life, whether it’s with love, marriage, friendship, or a career. I’ve been so close to death that I realize just how short life is. It’s cliche, but you really only have one life to live. It becomes way more evident when you come so close to losing your life. 

What are things you wish you had known before your diagnosis? 

Michele: The less I knew about cancer, the better. It allowed me to fight harder and not be discouraged by bad news or having “too much information.” Not knowing actually allowed me to handle things better, on my own terms.

What sources of information or support helped you during your journey? 

Michele: My doctor and my mother were my main support. My mother especially juggled so much. 

For myself, I have found it almost impossible to find local support groups. I’m not much of an internet/Facebook support group person; I prefer being able to talk to people in person. I do better in one-on-one or group settings with people physically. I even asked my social worker, and she told me that the support group for my cancer type ended at my hospital in Florida after the pandemic. Everyone is online or on Zoom now. Other types of cancer have far more in-person support, and I just wish that there was more for blood cancers & especially Leukemia. 

What motivated you to start sharing your cancer story?

Michele: When I was initially diagnosed in 2014, it was stressful to think about how to break the news. Do we keep it a secret and only let a few people know? Do we let the world know? I was running a business so I couldn’t just go into hiding out of nowhere. I figured it was easier just to tell the world, but what does that even look like?  

It was suggested I should start a blog. Mainly for people who knew me personally or who loved me from afar could stay up-to-date with my progress. The decision was made pretty early on to just be open. Hi, this is Michele, and I Have Cancer. I was fighting for my life and I’m glad I wrote about what I was experiencing. Writing was a great form of therapy for me, and it was a great distraction also. I was brutally honest. The posts were probably far from perfect due to a haze of chemo and other medications. I always tried to add levity where I could. People continued to connect with it. Even people who hadn’t been through cancer found it inspiring. I ended up winning an IHadCancer Blogger Award in 2016!

What message would you give newly diagnosed cancer patients?

Michele: It’s OK if you’re not OK. 

When I was going through cancer, I was made to feel like I could never show any kind of negativity. I feel it’s expected of cancer fighters to be a certain way and portray ourselves as always positive. I’m strong regardless, even on the days when I was sobbing all day. You’re a mess during cancer and that’s OK because you're fighting for your life. 

I had a lot of visitors in the hospital, and that leads to another message for the newly diagnosed. You shouldn’t feel the need to entertain or comfort people who are visiting. No one should make you feel that way, not even yourself. I always would put on a brave face until visitors left, and then I would just slump from the extreme fatigue. You already feel like you’re making people uncomfortable by seeing you so sick. However, the reality is you’re fighting for your life. The most important thing right now is YOU.

Connect with Michele on IHadCancer, or on Instagram @oldfashioned_michele!

Photo courtesy of author.