My journey with Myeloma - From diagnosis to remission!
– By Corlie Liebenberg
My name is Corlie. I am 42 years old. I became a member of the Multiple Myeloma family in January 2022.
During September of 2021, I started experiencing pain in my left hip. The pain soon got significantly worse. X-rays were taken by the end of October, and at that point there was no indication of anything serious. Yet, I couldn’t bear any weight on my left leg and/or hip. By the third week of November, I was unable to walk without the support of crutches. My upper right arm also started to pain intensely. I thought that it was because of the use of the crutches.
I tried to manage the pain with over-the-counter anti-inflammatory medication, going to physiotherapy and even a chiropractor. Nothing helped. On 10 January 2022, I was unable to get out of bed due to excruciating pain, and an ambulance had to transport me to George Regional Hospital.
X-rays taken that day, indicated several lytic lesions in my hip bones, right upper arm, skull and ribs. I had no idea what that meant. I was hoping for a hip replacement so that I could go on with my life, as I was a healthy 41-year-old before my hip problems started.
Initially I was admitted as an orthopedic patient since my hip was so badly damaged. However, it soon became apparent that my bones were riddled with lytic lesions (holes) and that the problem wouldn’t be solved with a hip replacement. I was transferred to Internal Medicine. During the following three weeks’ stay in hospital, there were fever, anemia, delirious spells, a lesion biopsy, lots and lots of blood drawn, urine tests, talks about the possibility of lymphoma and a bone marrow aspiration. There was also the loss of use of my left leg, right arm and bladder control. I was physically unable to take care of my children and alternative arrangements had to be made. Suddenly I was wheelchair bound.
It was a tough time! However, I received the best care I could ask for. My doctors were intrigued to figure out what was going on. And I believe that is what contributed so greatly to the success of my story. I also received tremendous support from family and friends, and still do.
I am fortunate to still have both my parents who went to George to support me. When Multiple Myeloma was confirmed about a month after my admission to hospital, I started with more specific treatment. Bit by bit I learned more about the disease and came to understand that the lesions are caused by the cancerous plasma cells in my blood, and that it was only one of the possible symptoms of Multiple Myeloma.
By the end of February, we left George and returned to my parental home in Strand. My hospital care was transferred to Groote Schuur Hospital where I became a patient at the Multiple Myeloma Clinic at the Hematology Department. I received my weekly chemotherapy in preparation for my autologous stem cell transplant, for the following approximate six months at the clinic. The staff at the clinic soon became welcoming, familiar faces that helped to shorten the days. Even though there were mild side effects from the treatment, gradual improvement in terms of pain and mobility was notable. I regained use of my bladder, right arm, left leg and slowly but surely became more and more independent again in terms of mobility and self-care. 7 months after being admitted to hospital, I was able to drive my car again. And gradually the new normal became more normal…
My stem cells were harvested in September. Yes, at that point, my hair fell out and I have been wearing my mother’s turban creations with pride for about 5 months!
There was (is) a waiting list to get a bed in the Hematology Department’s ICU to get a transplant and I was admitted in November. The two months that passed since the stem cell harvest, was a welcome break from chemotherapy for my body. On 8 November, I received Melphalan (chemo) and on 9 November I got my amazing autologous stem cell transplant. Yes, the time in isolation in the ICU was tough, but again, the care I received was great. I was discharged on 24 November.
Since then, I have been to family gatherings, shopping malls, restaurants, concerts and even walking about in Kirstenbosch Botanical Gardens. My mother and I take 1 – 2 km walks about 2 – 3 times per week – something I didn’t know if I would be able to do again. I even drove to see my children’s school in another province!
And the highlight of my story – I am currently in a Complete Response (meaning the Multiple Myeloma is currently not detectable in my body)!
My story isn’t finished yet. I must find work again; I hope to have my children close again. But thanks to the efficient diagnosis and correct treatment, I have a new chance to (almost) continue from where I got sidetracked. As a bonus, I’ve learned a lot of medical terms I never knew existed, made new friends in fellow patients and medical staff, and had the opportunity to document some experiences and emotions through my social media group. It was tough, but I’m tougher!
It is my hope that patients will be diagnosed sooner rather than later, so that treatment can start as early as possible, because there is life after Multiple Myeloma!
