From New Zealand: Mel’s Story
Part 1: My journey
The word cancer is scary enough, and adding incurable in front of it only intensified the fear.
In August 2020, at the age of 34 I was diagnosed with WM. The diagnosis came out of the blue as I was a young, fit and healthy mother to four beautiful children who were aged 6, 4, 2, and 9 months.
Although it was communicated that WM is a low-grade lymphoma and that patients can live a long healthy life, the initial fear from the diagnosis overruled my ability to comprehend this good news. Once the shock of incurable cancer settled, I tried to get on with living my best life and forget I had cancer simmering inside me (turns out it’s pretty hard to forget!). After nine months of regular monitoring, despite having minimal symptoms I was sitting in my Haematologists office discussing my treatment plan due to the progression of my disease. Due to the rarity of WM, especially in my age group, we sought a second opinion for my treatment options from Dr Jorge Castillo, a leading expert in WM. Alongside my Haematologist, we decided to proceed with chemoimmunotherapy (Bendamustine and Rituximab).
In New Zealand, the clinical guidelines/standard of care for WM treatment is six months of Bendamustine (plus Rituximab). While my chemoimmunotherapy came with its challenges, my general side effects were minimal, and my body responded well to the treatment. In fact, my body responded so well to the treatment, that I had achieved a Very Good Partial Response (VGPR is a >90% reduction in pre-treatment IgM) within four months. After a lot of research, and with the invaluable support of Dr Castillo consulting with my Haematologist, considering I had achieved a VGPR I was able to gain the support from my clinical team to go against the clinical guidelines and stop at four rounds as evidence suggested that further chemotherapy would not necessarily prolong my progression free survival (PFS). I weighed up my options, whether to stop at four or continue – knowing that I don’t believe in regrets. I followed the evidence and my intuition and stopped at four.
A Photo of my husband and I at my first chemotherapy treatment in May 2021. In a weird way, we enjoyed these appointments, taking a laptop/headphones and watching comedy shows to pass the time – while trying to be discrete as it seemed a somewhat inappropriate setting to be giggling in.
I was excited to start my next chapter and put treatment behind me. Being diagnosed with cancer, and going through chemotherapy puts things into perspective and enhances your appreciation of life. You see the world differently. You appreciate the small things and see beauty in places where you didn’t see it before. My energy regained and I continued living my best life and ensured I took care of and nourished my mind and body in the process.
Evidence suggests most people have several years PFS before requiring treatment again. Unfortunately for me, I was an outlier. Nineteen months after finishing treatment, I found myself back in my Haematologists office planning my next course of treatment due to the unmanageable progression of my disease and symptoms.
Unfortunately, as Ibrutinib or any other BTK inhibitors are not funded in New Zealand, and the exorbitant cost to self-fund this was not a fee we could sustain long term, I was faced with another course of chemoimmunotherapy… despite this treatment option not being recommended as a second line treatment by my clinical team due to the short PFS I had obtained. I didn’t want to have chemotherapy again so soon. And I couldn’t just accept that chemotherapy was my only option without doing further research. I was determined to not give up and find a way to access a safer more effective treatment option. To cut a long story short (within a few weeks, just in the nick of time), after a lot of research, I managed to legally import a trusted generic Ibrutinib from overseas. I pay out of pocket for this; however, it is at a fraction of the price of the Ibrutinib we can access in New Zealand.
After several weeks of taking Ibrutinib, my IgM is reducing, my haemoglobin is increasing, my energy levels are slowly returning and I’m able to slowly get back to being the happy, bubby, energetic mum my kids have missed. The overwhelming fear I had at the outset surrounding WM has dissolved and I am confident and excited about the future.
Furthermore, I have now embarked on a new journey and have joined forces with our lovely IWMF Affiliate in New Zealand to accelerate the advocacy of having Ibrutinib funded for WM in New Zealand. Whether or not we are successful, I have been humbled by the support we have received from WM experts worldwide in backing us on our efforts to have safer more effective WM treatment options available.
Part 2: Mind – Body connection
I want to hijack my own Story of Hope and share some learnings that have helped me along the way about the importance of looking at our health holistically – mind and body.
In addition to the healing power of time, my perspective changed the intensity of my fear. From the start, whilst undeniably daunting being diagnosed with “incurable cancer”, I worked on shifting my perspective from focusing on the double whammy of those two powerful numbing words to focusing on the underlying reality of WM – slow growing, low grade, not life threatening, long PFS, and the motto “you’re more likely to die with this disease than from it”. But this change in perspective did take time.
Cancer is a scary powerful word. Who would have thought that a combination of six letters, whether it is heard, spoken or read, can cause so much pain and fear. Growing up, I had formed my own stereotypes and beliefs about cancer. I had associated cancer with a death sentence. So being diagnosed with it, was frightening. And don’t get me started on the word “incurable”. When I heard that word … after already being in a state of shock after hearing I had cancer, I felt I lost all my power. That I was powerless to do anything about this cancer. This cancer that I never asked for. That was a hard pill to swallow. I have always had a strong internal locus of control – a feeling that I (not external influences) am in control of my circumstances, and therefore have the control and power to remedy any issues. My fear grew with the thought of losing control. I no longer felt safe now that I was no longer in the driver’s seat. Then, although I felt as my power was already lost, I also unconsciously and metaphorically willingly gave it up. I gave it to my Haematologist, in a desperate plea in hope he could cure me or at least keep the cancer at bay. Turns out he couldn’t.
But as time went on, the fear started to dissipate and I managed to resurrect my natural positive optimism that was knocked back at the diagnosis. This enabled me to reclaim back the power I had so desperately given away. It is this reclaimed power that gave me hope again, and made me feel in control of my health. It enabled me to embark on the research throughout my journey to ensure I got the best possible outcomes. I know I wasn’t as fortunate as most to have a long PFS, however I accept that as part of my journey. At no point has my decision to cease chemotherapy at four months resulted in regret (that’s also a powerful word and a feeling that I reject from taking residence upon within me).
Regrets are nasty little things. They may serve their purpose in the initial outset, as a protective mechanism to help you reflect on past actions, but holding on to them only causes psychological (and subsequently I believe, physiological) challenges. The same can be said for guilt, although I found this one hard to shake. I accept that it’s natural to experience these emotions. I struggled with letting go of guilt after my diagnosis. I felt guilt that I had let my husband down now that his wife had cancer, I felt guilt that when my symptoms progressed I wasn’t the happy, bubbly, energetic mum that my kids loved and needed, I felt guilt that I was a burden on my family, who all came together to help look after my kids and I when I went through and was recovering from treatment. It is amazing how these harboured (unnecessary) emotions interfere with our mindset, judgement and subsequent actions – most often than not in ways that are not conducive to our health.
I have always been fascinated about the mind body connection. How the sheer thought or sight of something can cause physiological changes. We’ve always known this, it’s part of our biology: stress causing headaches, butterflies in our stomach when nervous, feeling hot and sweaty when fearful, the lump you get in your throat when you hold back the tears. But do we sometimes take for granted how surreal our bodies are? When you stop to consider, how our minds subjective interpretation of a stimulus (formed by the subconscious memories and beliefs we have created from our past experiences) can trigger an emotion. Of which releases a cascade of chemical messengers to ultimately alter the functions of our organs and body systems – even when the interpretation is incorrect! It is an unbelievably fascinating and sophisticated phenomenon. These very processes exist to protect us from harm, by initiating the fight or flight response and communicating to us when we are safe or when we are in danger. But things can go astray when this beautiful synergistic system is dysregulated, and misinterpretations are firing. In a sneaky collaboration with my body, fueled by misinterpreted fear, my mind even started manifesting symptoms, physiological symptoms that I genuinely felt… yet upon realising that these symptoms could not have progressed this quickly, they vanished. Forever. The weight of the fear after my diagnosis caused constant conflict between mind and body. It hindered my innate ability to smile, to eat, to think clearly – the things we take for granted. It had completely, without my permission, shut down the physiological channels that allowed me to do those things. The emotions that accompanied the cancer diagnosis were making me feel sick. The psychological side of cancer was becoming more troublesome than what was physiologically mutating inside me. I was fortunate to have had a supportive network of friends and family around me, and (albeit knocked back at the outset) genuine optimism and faith that helped me get through this time while my body was still catching up to the news that I was going to be ok!
Indigenous cultures throughout the world, have such a wealth of knowledge and the most beautiful poetic, philosophical views on life and wellbeing that we all can learn from. In New Zealand, we have a model of health which illustrates the Māori (our indigenous population) view of health. This model, Te Whare Tapa Whā illustrates four dimensions of wellbeing: physical, mental and emotional, family and social and spiritual (and connection with our land/home). When all these dimensions are strong and in balance – we feel well, we feel powerful. When life throws us lemons, and one dimension (or more) is compromised or absent, we need to strengthen the other dimensions to carry us through while that part strengthens and heals.
Te Whare Tapa Whā beautifully, holistically and simplistically provides awareness of the integrative relationship between these dimensions and our health and wellbeing. Regardless of whether individuals acknowledge it or wish to identify these dimensions under different words/names, insurmountable evidence proves the scientific accuracy of this concept. Our mind, emotions, connections, beliefs, and physical health impact one another.
It is not only about the physical symptoms and challenges we face with WM that affect our wellbeing. It is about the mental, emotional and social challenges of not only living with cancer but having that debilitating word ‘incurable’ attached to it. It is about how these mental, emotional, social, and physical challenges impact us and those around us. It is about the degree to which it challenges (yet hopefully strengthens) our hope, our beliefs, our faith, that we will be ok. Strengthening and addressing all dimensions of your wellbeing when facing cancer (or for anyone!) helps you find your power. And cliché, but it may help you find yourself – to which sometimes it can feel like we lose in the face of adversity. Strengthening these dimensions can be difficult, especially if it involves shifting lifelong unconscious belief systems we have held about ourselves and the world around us. Or if it involves shifting out of our comfort zone to adopt healthier behaviours – be it physical, social, spiritual, or mental/emotional. But if you look around, and ask for help you will find the support you need.
I eventually managed to find a healthy balance with my internal locus of control. This balance allowed me to retain the innate confidence and drive required to find solutions when facing a problem, whilst being open to the possibility that some things are outside of my control, and that is ok too. This acceptance and art of knowing when to surrender control in certain situations lessens the fear, the tension, and the resistance. The welcome relief and suppression of these conflicts helps you seek and accept external support and takes the pressure off when you are faced with an invincible situation. How invincible your WM is, or the symptoms that may arise with it is a matter of your personal clinical circumstances and perspective.
The human body is a beautiful synergistic complex system, comprised of trillions of cells working around the clock with a shared goal of keeping you healthy and alive. Appreciating this fact and acknowledging that this cancer is an unfortunate occurrence with no malicious intent can help us move from victim mode on to our journey to wellbeing.
My hope for all WM patients, is that you:
- Adopt a positive perspective. I know it’s easy for someone else to say. However shifting your perspective to find the positives, opportunities, hope and gratitude in situations seems to lessen the severity (or even provide the antidote) to fear, guilt, and the other unpleasant emotions that unwelcomely arise throughout ones cancer journey. It costs nothing to look for these opportunities. Do the work and let go of any fears and beliefs you have around the word cancer or incurable. It surprised me due to the rarity of WM, however there is significant interest and involvement in the continuous advancement and improvement of WM treatments, and in finding a cure. There are already many treatment options of which the efficacy and safety is increasing exponentially. You are in good hands.
- Have a supportive network. We all need support. I gratefully (often with unnecessary guilt) accepted help from others to help ensure my kids received the full amount of love, attention and support they needed when my body held me back from providing this. I also had support from family with my research in the beginning when I was in fear mode and didn’t have the courage to investigate the disease myself. Swallow your pride (to which is often developed based on a misinformed belief that facing things alone makes you stronger / more successful-It doesn’t). Asking for and or accepting help when you need it is a sign of vulnerability (the good kind), self-compassion, courage, and authenticity. Which I believe are amongst the most important and beautiful qualities a human can express and are key to wellbeing. If you’re offered genuine support, accept it.
- Have a physician you feel confident with. It is well reported that the patient – physician relationship impacts patient health outcomes. I feel fortunate to have a Haematologist who believes in patient centered care, and who understands and respects my thoughts and needs.
- Do your research. Knowledge is power. We are extremely lucky to have such a plethora of support and information through the IWMF including the extensive list of WM experts at our fingertips.
- Respect your body. Its under a lot of pressure. Don’t intentionally give it anything else to worry about. Be kind. Be grateful. Be gentle. Be mindful. Be healthy.
- Live your best life. Enjoy life. Relax. Smile. Do fun stuff. Go on adventures. Use your perspective, gratitude and creativity to find ways through any pain or suffering, be it mind or body (while obviously informing your physician of any symptoms, pain or suffering! Unfortunately, not everything can be remedied with a positive mindset and a leisurely outdoor stroll!).
Remember while some of us may be outliers in terms of how long our PFS is, or what symptoms we get, you are more likely to die with this disease than from it.
Take care, and I wish you all the best on your WM journey 😊
Mel from New Zealand