The “Domino” Effect

The Buddhists say grief is the price we pay for love. On Friday night the wounds I had just managed to seal with the death of my father in 2022, were ripped wide open.

My dear friend Domino Lee died. She was the only other person I know who had my disease, Multiple Myeloma. A rare and incurable cancer of the bone marrow.

Dom was someone that I not only really cared about, but someone I greatly admired. Although our blood cancers differed we shared a lot of overlap. She was also a pillar of strength for me. She used to say, “It pains me to know and hear that you don’t have a support network there,”. We had a connection that is irreplaceable. She would check in on me and we would rant at each other without needing to explain.

Assisted Suicide was something we both wanted and discussed a lot. We both agreed that quality of life was the most important rather than the length.

Dom lived in New Zealand with her husband, Justin, and her Jack Russel, Max. She was smart, funny, a city high-flyer who was struck down by MM around the same time as me, hers 2018. Mine 2017. She was an adrenaline junkie and loved to travel. Her sickness developed much faster than mine and all the high energy things she loved doing were impossible for her.

She had chemo because she told me, “I wasn’t brave enough not to, and Justin would never entertain that thought,”. Dom told me during our first 3 hour phone conversation that the isolation during stem cell treatment was the absolute worst.

Her haemoglobin stayed stable for 2 years on drugs but it was still well below normal levels. She struggled every day and the side effects were horrendous. She managed to pass what she liked to call her “expiration date” June 6th 2020. When she was diagnosed they told her she had 2 years to live.

But Mutliple Myeloma is incurable and rare. And when you have a blood cancer there is no fairytale ending.

In December she told me her lightchains (this shows the amount of cancer in the blood) had been “trending upwards” for about six months and then in February, while I was in Taiwan, she sent me a message to say she had been hospitalised for a week after suffering a stroke.

Dom’s heart had been overworking and the amyloid deposits (protein) went into her heart, and her feet, lungs and stomach ballooned.

“They have now got control of the fluid in my lungs,” she wrote to me, “but I am still walking about like a whale.”.

The news she gave me next was a bombshell. “Essentially I have maybe three months if my heart gives up. I raised the issues of assisted dying and was told I have to start the process now and hope to be approved.”

The system is broken, here is a woman suffering mentally and physically and has an incurable cancer and she still had to lobby her case. They told her that “pain is subjective”. What the fuck?!!!

I was so angry because if those people had to go through just one day that she lived everyday, they would jump off a building. No one understands the grind of living with Myeloma other than another patient.

My dear Dom was so very tired of the idea of yet more treatment that doesn’t work and more exhausted everyday. The stroke was the last straw for her mentally.

She told me, “I just want out already.”

I cried reading those messages. They granted her wish to have AS.

She wrote, “So I have fixed my Assisted Dying (AD) date,…it will be October 8 at 11am. I have the option to change the date depending on how I am closer to the day, and can bring it forward or push it out another 6 months.”

Talk about a minefield for the patient to make. No counsellor or support or advice, just pick a date. Off you go.

Domino loved her husband and her dog. She would have good days when she thought perhaps she can live a little longer. And then bad ones when she wanted it over now. She was confused and scared.

In the meantime she had to decide whether to continue chemo to reduce the lightchains (that somehow impact the amyloids) and watch her blood levels plummet and need ridiculous amounts of platelets and transfusions or stop the chemo and wait for the cancer to take over. These were her options.

Our last message was April 19th, she stopped replying to me.

Her sister Dorothy who is my friend from Koh Tao diving days introduced us. When I hadn’t heard from her I messaged Dorothy.

She told me Dom was hanging on and was in bad shape. Dorothy managed to get a message to her from me, telling her that I was holding her in my heart and thoughts, the night before she died. We never got a chance to meet in person.

Reading she had died felt like a punch to the gut. I wanted to throw up and then like a huge wave the tsunami of tears came and haven’t stopped for 2 solid days. I cried less today, but when I talk about her, it is still too raw and I feel like I can’t control my emotions again.

Saturday I felt like I was drowning in grief all over again. Dorothy had been living on standby mode for the last few months to be ready to fly to NZ whenever Dom wanted her. But Dom changed her mind about her October date and moved it forward without telling her family. She took the stress out of her sister’s hand without telling her. Stoic to the end and always trying to protect those she loved. Typical Dom.

I know living with Myeloma is exhausting everyday and particular on the days when the blood is low you can’t remember things and make decisions without a lot of energy. God knows what she went through at the end.

The pain and suffering clearly became too much and Dom decided May 31st would be her last. In her last 10 days she had no strength. Dorothy told me Dom had to wake up her husband every 2 hours at night and ask him to turn her over in bed. She was barely sleeping and had no strength to roll herself over. Crippled by weakness.

I am relieved she took the injection. They administered it and within a minute she died. But even the process of making this choice to leave was filled with anguish. There was no stress-free road like we both spoke about. That is a fantasy that the living like to believe. I know this now thanks to Dom. She was my guide in all of this, always a little further ahead on our journey.

Dom would write me messages saying “ What new adventures are you planning Asha?”.

I never got to tell her about Tibet, she would have been thrilled and tinged with jealously in the best possible way. She always told me to live life full and she meant every single word of it. She couldn’t do half the things I can do and she told me, she was “amazed how strong” I am.

Dom had a big heart when it came to encouragement and her generosity about living vicariously through me, even when she was shackled to the hospital, was endless.

There is no one else now for me like Dom. Selfishly I feel empty, lost and beyond sad. She showed me a true picture of what health officials feel about people who are sick and what the system requires.

Dom has been my wake-up call to AS and it is absolutely bloody terrifying to know what is in store. The small print of things you have to prove and argue to be able to die with dignity is fucking bullshit! And there is no guarantee it will be granted. And I worry a lot about this.

Tibet and basecamp Everest is looming and every part of the way the two people I will be carrying in my heart will be my father and Domino. I watched both of them die from afar helpless. They were so very important to me in different ways but they were also two very inspirational souls.