In many ways, a life-threatening blood cancer diagnosis gave Jennifer Marx a sense of relief and helped increase her feelings of self-worth. Through living with multiple myeloma, she learned how to be more vulnerable, and developed stronger relationships with her family. Jennifer also became a founding member of a peer support program at the Leukaemia Foundation to help young people with cancer.
Jennifer was diagnosed with multiple myeloma just before her 27th birthday.
Myeloma is a blood cancer that starts in the bone marrow and affects plasma cells which help fight infections. It affects many areas of the body with most people experiencing multiple lytic lesions. These are areas of damaged and weakened bone. Around 2600 people are diagnosed with this blood cancer in Australia every year.
When I was diagnosed, there was a huge sense of relief because I thought I was going a bit crazy,” Jennifer says.
Over the previous 10 years, she’d experienced numerous serious health issues ranging from heart palpitations, painful joint inflammation and exhaustion, bacterial infections, and a bad flu with conjunctivitis in both eyes. When she was 25 years old, Jennifer was diagnosed with a blood disorder called hypergammaglobulinemia (when your body produces too many antibodies) and began receiving blood transfusions every four weeks. This helped temporarily, but then she felt worse.
Jennifer’s kidneys stopped filtering waste from her blood and her heart began failing.
Additional tests found she had multiple myeloma.
Learn more about common signs and symptoms of blood cancer.
Although the news was confronting and difficult, Jennifer also uncovered some positives. After so many health issues, she felt relieved there was a clear path forward for treatment.
Physically, obviously, I was feeling crap, but mentally it was a real mixed bag,” she says.
“The cancer itself absolutely empowered me as a human being. It’s made me more confident. I had a lot of self-doubt before the cancer in terms of whether people liked me, if I was any good, if I was smart – imposter syndrome,” Jennifer recalls.
But when she shared her diagnosis with people in her life, Jennifer was blown away by their level of support and says this helped her connect to a real sense of self.
From independence to vulnerability: a new way to move through the world
Her parents were devastated by the news. Over the following months, living with blood cancer would transform their relationship with Jennifer.
I guess it felt like a bit of a role reversal. I felt like I had to be the parent in this situation. I was more worried about them than I was about myself,” Jennifer remembers.
Her worried parents wanted her to move home. But Jennifer had always been fiercely independent and continued living with her flatmate while undergoing six months of chemotherapy. Later, following a stem cell transplant, she stayed with close friends who were also nurses and this helped reassure her family.
Realising you can’t do everything on your own can be a big adjustment for patients and accepting help is sometimes difficult. Jennifer experienced this firsthand when she needed medication to help with a tremor and declined her dad’s offer of help.
We had a blowout about it. I was like, ‘No, I can go to the chemist my damn self. I’m an adult. I’ll go to the chemist.’ We had a big fight and he got really upset at me,” she recalls.
“Two hours later, my dad gets a phone call from my mum saying I was on my way to the hospital in an ambulance. I’d handed in my prescription, immediately collapsed and had a grand mal seizure in the middle of the pharmacy.”
“My dad never really recovered from that. I think at that point I had to give up a bit of independence.
Sometimes you need help
Navigating life after a blood cancer diagnosis can bring up a range of emotions for patients and their loved ones. Emotional support services such as counselling and psychology sessions can help people understand and process their emotions in a non-judgemental space, and learn new coping skills.
In many ways, Jennifer found it easier to deal with the practicalities of receiving treatment and undergoing the transplant than the emotional impacts.
I found the periods of recovery after the transplant to be the hardest part of the whole journey. When you are in it, you literally have one task and that’s to follow the instructions of the doctors to get better. Then you’re left to your own devices to rebuild.”
“That was the hardest part for me. I really struggled and being unable to be vulnerable made me struggle with it more. I got into my own head and was in a dark place. It wasn’t great,” she remembers.
Working with a psychologist helped Jennifer reframe her feelings and understand it was okay to be vulnerable and express her emotions. Although her independence had helped her push through the hard times, she learned holding everything in didn’t necessarily make her stronger.
Learn more about the Leukaemia Foundation’s emotional support services.
It wasn’t until I was at home recovering that I started to really understand vulnerability is a strength and not a weakness. I think that’s essentially why I turned a corner into the sort of person I am today rather than, in comparison, the person I was before my diagnosis.
Fertility and living with long-term blood cancer
Multiple myeloma is an incurable blood cancer and, seven-and-a-half years after her transplant, Jennifer relapsed. With the added complications of the pandemic, she went through chemotherapy again, followed by another stem cell transplant.
Thankfully, the second transplant was successful and Jennifer went back into remission. Once again, she found herself in the recovery phase, but this time she found a purpose to help her stay positive and keep moving forward.
She already had a little black and white cat called MJ and decided to adopt a sweet puppy called Louie.
“I can’t have my own children, so he can be my baby,” she thought.
Both pets have brought wonderful joy and companionship into her life.
Jennifer always wanted children of her own. However, her cancer was very advanced when she was diagnosed and she needed chemotherapy as soon as possible. This meant her fertility was compromised and she later needed a hysterectomy due to side-effects from treatment.
She found this difficult to accept, particularly as many of her friends got married and had children. It also added an unwelcome dimension to her dating life.
I’m a lot better now at introducing cancer to new people and all that sort of thing,” she says. “I just rip the Band-Aid off and tell them at the very start. I even put bald photos of me on my Tinder account.”
“I may as well be completely blunt about it up front because I want to weed out the people that aren’t ready to battle that with me.
“But it’s hard.
Coping with blood cancer as a young person
It has been a particularly lonely experience for Jennifer because myeloma usually affects people aged in their late 60s or older. The average age for a myeloma diagnosis in Australia is 72 years.
“They’re already married and have got their life sorted,” Jennifer says. “They’ve probably had kids and their struggles are very different to mine. They’re not looking at things like infertility and hysterectomies.”
I attended a regular support group and was so young compared to everyone else. It was isolating. My experiences and hardships were not the same – infertility, working, dating, living an entire life with the fear of when it will return and so on.
In 2022, Jennifer decided to help other young people navigate their cancer journey. Working alongside other blood cancer survivors, she helped establish the Leukaemia Foundation’s 20s-40s Peer Support Group.
Check out the Leukaemia Foundation’s 20s to 40s Blood Cancer Peer Network on Facebook.
Jennifer has been instrumental in planning, writing and delivering peer support group sessions and draws on her own experiences to help others feel seen, heard and supported.
“It has been an incredibly rewarding passion project for me,” she says.
A second relapse
“Even though 13 years have passed since I was diagnosed, I am still considered to be an extremely rare case based on my age and how I respond to both the cancer and the chemo,” Jennifer says.
Unfortunately, she relapsed earlier this year and will soon begin another 12 months of chemotherapy. Once again, Jennifer will draw on her strength, close friends and support network to help her get through treatment.
This article shares personal experiences and general information. For tailored advice, please consult a healthcare professional.
Listen to the full interview with Jennifer Marx on our Talking Blood Cancer Podcast.
