Faye Johnsen shares her inspiring approach to living with the incurable blood cancer, myeloma. The following are Faye’s words, shared with the Leukaemia Foundation to mark Myeloma Awareness Month in May 2021.

My journey

I was diagnosed with myeloma in August 2015 and started treatment immediately with 16 cycles of the drugs, dexmethasone and bortezomib. This was quite a rollercoaster ride with five fractured ribs, eczema, and a painful bout of shingles. After 16 weeks, I chose to have my stem cells harvested and my transplant, on my 67th birthday, was a success.

My blood markers stayed low for three and a half years and I felt so healthy and “normal”. During this time, I continued with the drug, pamidronate every three months to strengthen my bones. I was on no extra medication which I so appreciated.

I am a fit person for my 70 years, so during this time, I swam at the local pool, did weight training at the gym, rode a mountain bike and an electric scooter, and walked after dinner. I love being out exploring nature and walking in our rainforests.

I’ll be the first to admit, it is not always easy or possible but as you may have guessed, I am a very positive and a strong willed person….just ask my husband!

Relapse and new treatment

I relapsed in 2019 and started my new treatment in October that year. My reading was 374 compared to 1438 when I was first diagnosed. This treatment consisted of the drugs, dexamethasone and carfilzomib twice a week. I believe my commitment to my fitness helps me to cope both physically and mentally.

I have always eaten very healthily, so when the dietitian made no changes to my diet, I was very happy. Where possible, I did a short 30 minute gym session in the small gym at the oncology rooms before my treatment, as this helps to ‘pump up my veins’ and, therefore, makes it easy for the nurses to find a good vein for the cannula.

The masks I wore were a talking point in the oncology rooms and I’d always get a smile from the other patients with my different drawings which I stick to the front.

I make it my mission to make someone laugh on my treatment days and I have heard some amazing stories from other patients who have overcome so much.

Now back to the future

After seven months of being on my new treatment, my oncologist, John shared my blood results. I said, “Wow it’s a miracle!”. He replied, “Turbo (his nickname for me), it’s the carfilzomib doing its job!”. I shook my head…. saying to myself, “I’m believing, it’s much more than that!”

My kidneys (which filter the drugs) and neutrophils/white cell count (immune system) are still being closely monitored with blood tests every two months.

Neutrophils make up the largest fraction of blood cells produced by the bone marrow. They are our ‘first responders’, playing the role of the first line of defense against infectious organisms that enter our bodies. These cells are the first cells to arrive on the scene when we experience bacterial infections. Normal readings are over two, my reading is 1.2, a reason for me to keep safe. I continue having quiet days after treatment until the side-effects settle.

Thursday, 18th June 2020 was a day I will remember for some time. As a relapsed myeloma patient, that was the day my blood markers showed an amazing fall. Reading of my free light chains was five and para-protein was zero with other results near perfect. These results are below what some myeloma patients achieve after a full stem cell transplant.

Getting through the COVID-19 challenge

My soul mate of 51 years and I continue to be careful and are aware of the ongoing dangers of COVID-19 for me. I avoid crowds, shopping centers, supermarkets and wear a mask for appointments. I so enjoy picnics with family or friends (allowing self-distancing) in the many parks on the Sunshine Coast in Queensland.

Support

Two of my ‘myeloma friends’ helped me celebrate my 70th birthday. We are such a strong support for each other. Cancer? What Cancer?

The power of my thoughts

Often, I get asked, “How are you so strong and positive?” My answer is, “If you were in a similar situation you would also find an inner strength”.

My positive thoughts and my Christian faith motivate me, guiding the way I live, feel, talk and act.

I also work at being thankful for the smallest thing. Before I go to sleep, I write in my ‘Thankful Journal’ things I am grateful for in that day. I can fill a page so easily and I believe concentrating on being grateful cancels any thoughts that could be negative. I also ‘tap’ my forehead to send it on its way.

My future

So many people ask me how long will I have to stay on this treatment? The answer is similar to diabetics who have to take insulin; myeloma patients need to be on some type of maintenance treatment which blocks the growth and spread of cancer cells while limiting damage to healthy cells. The drugs I am on may not be as effective down the track but I’m confident there will be other options for me.

In December 2019, I tripped on an electrical cord at the local swimming pool. I fell heavily on the cement, with hand and knee lacerations and twisted my neck and lower back.

Due to ongoing pain my fitness level has been affected. The only way I know to handle it, is to take one day at a time. This way there is no pressure to reach goals that may not be achievable.

I am flexible to how I’m feeling and spontaneous in what I can do that day. I have learnt to say, “No!”. I share my story with groups whenever I’m asked. I make the most out of every day and continue to smile which seems to overflow onto others.