Spotlight on Anthony Mohamed

Spotlight on Anthony Mohamed:

From hospital staff to hospital patient

March 2023

Anthony Mohamed

Queer Elders Photo Exhibit, September 2020

I walked out to my bike in front of St. Michael’s Hospital, where I had been working since 1995. It was just after 5:00 pm on a lovely Monday evening in late August 2015. I was catching up with a colleague, telling him about how much fun last week’s camping trip had been, but that I had so much back pain that the other guys had to help me get out of my bunk bed, and so I had made an appointment with my family doctor for the next day, Tuesday.

I had been experiencing severe pain in my back and ribs for about a year but as I was working out a lot, my doctor put me on muscle relaxants and arthritis medication.

However, that Monday evening as I reached down to unlock my bike, I couldn’t move. There was a strange loss of feeling in my back and legs. Soon after, when I was able to move again, to be safe my friend walked me into the Emergency Department (ED). They took an X-ray and found multiple fractures in my upper spine. The doctor sent me home without any advice except to follow up with my family doctor the next day. I rode my bike 30 minutes to get home and remember feeling every little bump.

The next morning, I took the bus to my doctor’s appointment. I noticed I could only stand or sit upright and asked the bus driver to avoid any holes as I had some spinal fractures. He asked if I should even be on the bus. My family doctor was sick that day, so I saw another doctor in my clinic. He had a resident do my assessment. After feeling the back of my neck and reviewing the results of the Emergency X-ray, he brought in the doctor who was supervising him. They said they wanted me to go back to the main hospital and get a more thorough X-ray done.

I had a work meeting that afternoon, so I thought I’d do it after. When I walked into the meeting, they looked up and said I didn’t look well. I explained my back pain and with their encouragement, I left and went to medical imaging. The technician’s eyes popped out of his head and he called his manager. Both looked at the screen, then looked at me and at each other. I asked what was wrong, but they said they were not allowed to tell me anything. They said they “highly recommend” I go to Emergency immediately and they would send their results down.

Two days before diagnosis, August 2015

I walked downstairs to the ED and almost immediately they laid me down and put a neck brace on me. They had found many fractures throughout my spine and ribs, and many holes in the back of my skull. They told me I would be admitted soon and would have to do a series of tests and scans.

I called my partner Rick and my parents, sisters, niece and nephews to tell them something serious was happening. They all came down from across the GTA. We were not given any information.

At around 9:00 pm, a resident doctor came in and said they believed it might be some sort of cancer but they needed more tests to confirm it, and that I would be moved to an inpatient room whenever one became available. Around 2:00 am, I woke up still in the ED, needing to use the washroom. I rang the bell, but no one came so I got up, dragging my IV pole. The floor was wet and after I locked the door I slipped.

Upon landing I was in excruciating pain. I had also urinated all over myself. I didn’t know what to do. I slid myself across the wet floor to pull the red cord. After what seemed like an eternity, probably 10 minutes, a nurse came but she couldn’t get me up. She called the housekeeper who lifted me into a wheelchair.

No one, including me, had any idea that I was now completely disabled as my spine had collapsed and my ribs were broken.

I found out later I had lost about 7 cm in height in that moment and my mid-section was completely compressed.

I stayed in that wheelchair until 5:00 am when they moved me to the new room. Two porters tried to lift me to my bed, but I fainted from the pain. The nurses had no choice but to put me in diapers and lay me in the bed. They also gave me a ridiculous number of laxatives to keep things moving.

To make matters worse, these were my direct colleagues who I normally went to lunch with who were now cleaning me up. Over that Wednesday and Thursday, they had to put a garbage bag under me to slide me back and forth on a stretcher to get various MRIs and other tests done. I fainted multiple times from the pain.

After a horrible bone marrow extraction on Thursday afternoon, two doctors came in that night to tell me I had multiple myeloma, a cancer I had never heard of. It was August 27, 2015 and I was only 47 years old.

Two months after first stem cell transplant, March 2016

One month before diagnosis at Pan Am Games Pride House, July 2015

Since that initial Tuesday night I had been in a dream state. When others were speaking, I didn’t actually believe they were talking about me being unable to move, discussing cancer and living with a severe physical disability.

Me!? I had climbed mountains, competed in international karate tournaments, never smoked or owned a car, and rode my bike everywhere.

The doctors asked me to sign a bunch of papers to start treatment the following Monday and explained that things were about to get much worse before they got better. I signed but given the state I was in, it did not feel like informed consent.

At the same time, HR had come to the room with disability insurance forms to fill out, accounts had come to settle hospital bills and multiple specialists were popping in recommending additional treatments.

I started CYBORD (cyclophosphamide, bortezomib and dexamethasone) three days later, to be followed by a stem cell transplant, radiation, and up to over 60 pills per day. Over the course of the next two years, I had hundreds of injections, IV bone strengthening and eventual kypho- and vertebro-plasty where they injected cement into some of my vertebrae to reduce the pain, then heavy maintenance drugs to ward off relapse.

I lay in that hospital bed for over a month with more than 300 visitors, many coming to say goodbye.

I fainted many times due to pain and only received sponge baths, but it oddly never felt like my life was over.

Relapse and second stem cell transplant, November 2021

Upon release I had no idea if I could even get up my front stairs, but we managed. Having home care for years and really only leaving the house for treatment was a real struggle.

I was completely out of shape, losing almost all my muscle. I could not get an erection for almost a year; my body was just too busy. While that may sound personal, I think it’s important to share. Erectile dysfunction and other sexual related side effects can have a devastating effect on most men, including me.

Unfortunately, I relapsed in 2021. This led to four more months of CYBORD and a second stem cell transplant which has resulted in my current partial remission.

I’m not on any maintenance therapy as my oncologist would like to save those medications for the next relapse which she expects within a year.

Some background on me:

I was born in Trinidad & Tobago but lived in Canada most of my life. I’m a descendant of Indian indentured labourers who were brought by the British in the mid 1800s to mostly cut sugar cane after African emancipation.

We were raised Christian, and I still maintain a strong faith. That faith helps me to address my ongoing experiences of systemic racism and homophobia in Canada, accept myself as a gay man and let God handle myeloma and other health issues, as these are too big for me.

After coming out in 1983, I became heavily involved in many social justice movements including those addressing HIV/AIDS. My career centred on striving for equity within the health sector both in Toronto and internationally.

Many equity-related achievements I initially thought society was doing quite well on, such as increasing access for people with disabilities, led to disappointment.

Living it up with Rick in Mexico, October 2022

When I experienced first-hand how every sidewalk bump, cold attitude of others, and the hoops required to get any financial help, it chipped away at my own sense of self. Wheel-Trans, the City of Toronto’s para-transit system, is great when it works but ridiculously unhelpful when it doesn’t.

In spring 2016, I decided to try and find others for mutual support. I went to Gilda’s Club and Wellspring but started with the Toronto & District Multiple Myeloma Support Group.

This was a club I never had any desire to join

and as I entered with my walker, I started to cry.

Munira, a woman I had never met, came and hugged me

so tightly that I just released all my tears onto her shoulder.

Knowing she was also living with multiple myeloma and of South Asian descent gave me a sense of belonging.

I eventually also became friends with only two other openly gay men living with multiple myeloma in all of Canada but sadly, both have since died.

Today, I still struggle with a sense of purpose since stopping work in 2015, but others tell me that sharing my story may indeed be part of it. I have actively volunteered with many community-based groups sharing my expertise in health equity. I’m riding my bike again, and travelling. My partner Rick, family, friends, church and care providers are instrumental in this journey.

Parents and sisters, August 2022

So, stay strong, ask for what you need with gratitude and be kind to others whenever possible as we have no idea what struggles they may be facing.

Anthony

Editor’s note: To find a local support group in your area, or for information on how to start one, click here or contact Michelle Oana, Myeloma Canada’s Director of Development and Community Relations at moana@myeloma.ca.

We hope you enjoy meeting our 2023 Spotlight Stars and your fellow Myeloma Canada community members. The Spotlight section of Myeloma Matters features stories and reflections supplied by members of our community - those living with myeloma, caregivers, healthcare professional - in their words. The views expressed and shared are those of that individual. We recognize that everyone’s journey and experience with myeloma is different.

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Myeloma Canada's mission: To improve the lives of Canadians impacted by myeloma through awareness-building, educational efforts, advocacy, fostering an empowered myeloma community and support of clinical research so that a cure may be found.