Spotlight on Paule Désir:
A story of hope and faith
July 2022
Paule Désir
My name is Paule Désir. In April of 2021, at the age of 53, I was diagnosed with multiple myeloma. Fifty three years of a life with its share of ups and downs!

A few years ago, I was diagnosed with cutaneous lupus as well as sickle cell trait disorder which leads to extremely low hemoglobin levels. At the time, I noticed my body needed rest after exerting a lot of energy or after a long trip. However, since 2019, the fatigue seemed more constant. I suffered from pain all through my body: my neck, back, hips, stomach, and head; I was also starting to worry about my concentration. In short, it was not going well. 
These symptoms were very difficult to live with and for a while time, I thought they were related to the cutaneous lupus. I decided to consult with a doctor closer to where I now live in Trois-Rivières, Quebec (at the time I was living in Mauricie which is about 3 hours away). The doctor had me take a few tests and shortly after, asked me to come back to the clinic for more tests and a lung X-ray. He told me I had an inflammatory condition and prescribed prednisone. He suggested I wait for the rheumatologist consult for which I was already on a waiting list. (In 2019, I had gone to my family doctor who had made the referral).

In January 2021, at my appointment with the rheumatologist in Trois-Rivières, I told her about my health conditions and the symptoms I was experiencing. She ordered more specific blood tests. In March, when the results came back, the rheumatologist explained that the blood tests revealed, amongst other things, the presence of a specific protein in my blood. When she called the Hematology and Oncology Department at the Trois-Rivières Hospital to have my case transferred and for me to be seen by a specialist, I knew I was going to have a special kind of battle ahead. The document she gave me for the specialist indicated Type 1 cryoglobulin and IgG lambda spike.

Within a week, I received a call from Dr Blanchette from the Trois-Rivières Hospital who explained that a bone marrow biopsy could help explain the cause of this specific protein’s presence in my blood. The biopsy was performed on April 8, 2021, and the results came back two weeks later. On April 26th, Dr Blanchette called once more; he had sent my pharmacy a prescription for dexamethasone and told me there was an ‘anomaly’ in my bone marrow. He would call again once he had more information.

On April 28th, Dr Blanchette called to explain that the anomalies in my bone marrow were caused by anemia, a specific protein in my blood, and that my IgG plasma cell levels were at 50% where normal levels should be 2%! Since I wasn’t familiar with these terms, I asked him what this could all mean…if it was cancer? He confirmed that I was exhibiting signs of multiple myeloma.
Up until then, if you had mentioned myeloma, I would have consulted the Internet to find out what it eats in the winter…😏.
I didn’t know anything about myeloma, but now I’m learning.

I’ve often thought to myself that I wouldn’t be surprised if I had a blood disease because of the sickle cell trait, lupus and osteoarthritis all competing in my body. I was sort of expecting something, but I couldn’t imagine under what form it would come.
When I was diagnosed, I was shaken; I didn’t know what to think. After reflection and some inspiration, I prayed that God would accompany me on this journey taking shape before me.

Thankfully, I was working from home. That day, I was supposed to finish work early so I could drive to Montreal for another medical appointment, which I cancelled. I didn’t feel I was in any state to drive for 2 hours, oh no! 😟 .

After a few minutes, I called my sisters and a cousin who live in Laval (QC) and in the United States. They were concerned but quite positive, especially my younger sister and cousin who both work in health care. I also spoke with my friends, some of whom already knew I was worried.
From left to right: Paule, Frantzie (Paule's sister and caregiver) and a friend from Haiti
Dr Blanchette was very empathetic and reassured me of the progress that’s been made and that myeloma treatments had very good results. He also told me that from this point on, his team would schedule everything, and my treatments would begin in three to four weeks. I had a bone X-ray. No bone lesions were revealed.

As I was living alone in Shawinigan at the time, my sister in Laval suggested I come stay with her while I underwent treatment. I agreed and asked Dr Blanchette to transfer my file to Laval’s Cité-de-la-santé Hospital. My first contact was with the pivot nurse at the Cité-de-la-santé Hospital who called me at the beginning of May. She told me I’d soon be meeting with the doctor who would be taking over my file. She also went over the services available to me and took the time to ask about my state of mind. In addition, she told me about Myeloma Canada and provided me with very helpful and informative material on the disease.
On May 21st 2021, under the supervision of Dr C. Lapointe, I had my first appointment with a medical intern. Once again, I underwent various tests, as well as an MRI (Magnetic Resonance Imaging); the MRI confirmed the presence of lesions in certain areas.

In July 2021, I started CyBorD treatment…an injection of Velcade once a week for the first three months. After this 3-month period, an injection of Zometa was added once a month. Dr Lapointe recommended me for an autologous stem cell transplant, and so my file was transferred to Hôpital de Maisonneuve-Rosemont (HMR).
In September 2021, I met with Dr Sauvageau from HMR. After evaluating my condition, he determined that I was eligible for an autologous stem cell transplant. Once again, I underwent many tests: blood work, cardio, lungs, breathing, etc.
 
On November 23rd, the apheresis (stem cell collection) successfully took place, and on February 17, 2022, I returned to the clinic for the stem cell infusion.
Everything went well!

For the next three weeks, I stayed under observation at HMR’s Hematology-Oncology and Cell Therapy University Institute; I had aplasia and neutropenia.
Paule, November 23, 2021 during her stem cell collection
When I was diagnosed, I was in shaken in every way. I had to change my plans given the uncertainties surrounding this disease…after all, a cancer is still a cancer. I had been wanting to move but had to put this project on hold. Instead, I moved in with my sister in Laval, stored some of my furniture, and sold what I could. I had to be objective and make choices that were best for my health. I was worried about how my already weakened system would respond to treatment. To be honest, I still feel this way, but fortunately my faith is unshakable; I’m not afraid of what’s next.

I work in Administration with a great team as part of a Human Resources department. Despite my initial concerns, myeloma didn’t overly affect my professional activities, although I worried that my lack of energy would impact my performance. I wasn’t used to afternoon naps. However, they become a much-appreciated break after a day's work and during treatment (when the medication seemed to make the nights shorter). I was fortunate to be able to work right up until I had my autologous stem cell transplant.

Long before I was diagnosed, I would walk twice a day. The pedometer on my phone is my incentive to meet my objective of 10,000 steps a day, that’s about 7 to 8 km…whether it snows, or hails, I’m out there! I’ve kept up with these daily walks and take the opportunity to reflect on life, its beauty and how precious and short it is. I am realistic and remain positive…one day at a time as they say.

I like to read, play Sudoku and other mind-stimulating games, or sometimes simply lie down and not do or think of anything at all; rest is important for me. I am particularly interested in activities that help me relax. Is this helping me fight the disease? I don’t know, but it keeps me busy and lets me say, ‘you know what myeloma, I don’t have time to think about you. Hahaha!’.
Paule and a friend
We have to take care of our mental health, welcome each day as gift and live in the present with serenity.

We know we can count on the resources at our disposal; don't hesitate to use them. Take full advantage of all the information and services available to us. So far, I haven’t yet joined a support program. Instead, I try to manage on a day-to-day basis, taking into consideration my state of mind at the time, but I am open to suggestions.

I’m interested in learning more about myeloma. I believe all information is useful. Being able to refer to resources that support both, me as a patient and my sister who is my caregiver at such a trying time in our lives will only help us through this journey.
Life is short. We must do everything in our power to remain optimistic and have a positive impact on every person who crosses our path.
There will be more to say since this is only the first step of many to come for me. I would like to express my special gratitude to all the health care personnel – doctors, nurses, administrative staff, etc. – from the various hospitals who are, or were, involved in my file. Everyone, in their own way, has shown me empathy, which encourages me to keep going!
 
A big THANK YOU!
Paule
A word from Frantzie, Paule’s sister and caregiver
My name is Frantzie Désir. I am Paule’s older sister and caregiver. When Paule told me about her multiple myeloma diagnosis, I was in shock and dumbfounded.

From day one, I promised myself I would remain strong and positive for her. I promised her that we would pray to God to help us through this journey. The night I found out, I didn’t sleep well. I called Paule early the next morning to suggest that she move to Laval and live with me while she had treatments and follow-up appointments.
Frantzie, Paule's older sister and caregiver
It was important for me to be by Paule's side to help her with everything she would be going through. It was important to help her stay positive in spite of it all. I kept track of her appointments in my schedule and wherever possible, I was with her for her treatments at the Cité-de-la-santé Hospital and the HRM; I encouraged her to remain strong. We had moments that of prayer together. Parents, friends, and members from our prayer community prayed to God for a cure. We are grateful to our Lord God for his presence and positive influence in our lives!
We are also grateful for organizations like Myeloma Canada that provide information to help patients and caregivers better cope with and manage the disease. Up until April 2021, I had never heard of myeloma. Myeloma Canada, the Cité-de-la-santé Hospital and Hôpital Maisonneuve-Rosemont continue to provide us with the resources we need to feel less overwhelmed and lost in the journey.

However and whenever possible, we hope to make our contribution, no matter how small, to advancing research for better treatments.
 
Thank you for everything!
Frantzie
Editor’s Note: We hope you enjoy meeting our 2022 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.
 
To all of you who have shared your stories in the past, and those of you who continue to do so today, we are indebted...you are an inspiration.  

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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.