Spotlight on Germaine Nadon:

Living solo with myeloma

July 2023

Germaine Nadon

My name is Germaine Nadon, I live solo and I am a myeloma patient.

At the time of my diagnosis, I Iived in Kelowna, in the interior of British Columbia. I had access to a cancer centre that provided some treatments, but no transplant options.

In June 2014, after one year of extreme fatigue and anemia, my calcium levels were at a dangerous level. There were concerns during this year that my symptoms were related to hyperthyroidism, however, this was not the case.

My GP and endocrinologist were 90% sure that I had multiple myeloma. I remember asking the GP if he was sure he was looking at my blood results, hoping there was a mix up, but no, they were mine.

I immediately started on a Pamidronate protocol to drop my calcium levels and proceeded to have a bone marrow biopsy. Two weeks later the life changing results were back, and the oncologist confirmed I had multiple myeloma IG Lambda free light chain, Stage 1.

Some of my stats, Dec 2014

I was 63 years old.

Honestly, those first few weeks were a blur of processing and accepting this diagnosis, balancing work, and medical appointments along with extreme fatigue.

I felt like I had been kidnapped and my life was no longer mine.

Because I live alone, the first thing was to figure out a support system…who could help me and with what tasks: meals, tracking appointments, transportation, medications, side effects, finances, travel, etc.

In Kelowna, I completed 3 ½ months of CyBorD (Cyclophosphamide and Bortezomib). After my first treatment, I lost my inner ear balance on my left side (which affects my balance on my left side) and acquired gastroparesis. To this day, these side effects remain. I have done extensive physio and eye work to compensate for my balance and today am glad to say most of the time I can manage without a walker or walking aid. Much later, it was determined that I had actually had a toxic reaction to the Bortezomib.

Living in BC, the only option for a bone marrow transplant (BMT) was as an “outpatient” at Vancouver General Hospital in Vancouver, BC. I applied to have my stem cell transplant done in Calgary (to be with my daughter) but was refused as I was not a resident of Alberta. A move was not an option at that time.

As an outpatient, I had to have a companion with me all the time. My daughters both had very young children so were not able to accompany me. Three friends volunteered to be with and take care of me so that the stem cell transplant could go ahead.

In November 2014, my friend and I flew to Vancouver. We stayed at the Jean Barber Cancer Lodge two blocks from the hospital. This accommodation was not free.

My daughter Kristie (Kris) shaved her head

to support me, Nov 2014

I spent 10 days preparing for and harvesting my stem cells then returned to Kelowna until there was an opening to complete my transplant.

With my Hickman line, Dec 2014

Hooked up to the apheresis machine to have my stem cells collected and harvested, Vancouver, Nov, 2014

Me at the Jean Barber Cancer Lodge, Dec 2014

In December, my friend and I flew back to Vancouver where I spent 4 weeks undergoing and then recovering from my stem cell transplant.

The bone marrow transplant unit was open from 7:00am to 7:00 pm daily, so any issues that arose outside those hours had to be dealt with in the emergency department at Vancouver General Hospital.

Needless to say, I was a guest in the emergency department more than once for high fevers and a platelet transfusion.

But there was great news!

I did achieve a full remission from my transplant.

No maintenance drug was recommended at the time.

The last week, we had to relocate as the Jean Barber Cancer Lodge closed for two weeks over Christmas. This forced us to move to a local hotel. The challenge became meals and transportation back and forth to the hospital but the tough survive and so did we! I was discharged at 7pm Christmas Eve and had to arrange a trip home on Christmas Day.

To maintain a balance between the sweet and not so sweet times,

I allowed myself 5 minutes of self pity a day. The days I did not need it,

stored up for the days I needed more than 5 minutes. Yes, there were a few of those days.

Giving myself permission to have self pity minutes helped me mentally move onto doing positive things.

It was very difficult managing all the side effects of the transplant and balancing the financial strain it placed on me. I maintained my apartment in Kelowna while covering the expenses of food, accommodation, and transportation in Vancouver for myself and my caregivers. Thankfully, Hope Air provided complimentary flights back and forth between Kelowna and Vancouver for both me and my care person. Accommodation, meals, prescriptions, and unexpected costs were my responsibility.

My biggest surprise was being handed a prescription at the BMT unit that had to be filled at the pharmacy. The pharmacist asked if I knew how expensive the drug was. I didn’t and so asked how much… he said $2,500 for one prescription, and I needed two! The drug wasn’t covered by my insurance company and I needed it to proceed with the transplant.

I broke down in tears, not sure how I was going to manage this cost.

The pharmacist was great. He managed to have the pharmaceutical company approve the drug for me under their compassionate care program. In gratitude,

I donated the unused doses to the BMT unit to assist other patients.

My network surrounded me with love, fundraisers, garage sales and physical support to get me through this difficult period.

I am forever grateful for the many people who were there to help me.

My sister Jackie also shaved her head in solidarity

Brain fog was ever present. To keep my brain engaged, I created spreadsheets to track my medication and registered for an online correspondence course. In 2015-2016 a Myeloma support group was started in Kelowna. I stepped in to lead this group and with help from Myeloma Canada's Michelle Oana we were able to have the first Myeloma March there in 2016.

Even though I was in remission, I knew I would have to prepare for a relapse and that meant having to make a move to either Calgary (AB) or Saskatoon (SK) to have family support.

So, here what was involved in moving to a new province:

I notified my oncologist 8 months prior to my move date so my application could be made to the new province and for them to accept me.
I researched which province had the most myeloma drugs approved for reimbursement.
I identified which province had larger oncology team resources.
I applied for new health care coverage in the new province, which ended up being Alberta.

My procedures and medications,

like my once-a-month IVIG (immunoglobulin) transfusions had

to be pre-approved by BC Medical for the first 3 months I lived in Alberta until my Alberta medical coverage kicked in.

I found housing and moved to Calgary in May 2017 as I had been accepted by the oncology team at the Tom Baker Cancer Center. Their strong oncology team has provided me with remarkable care ever since.

To celebrate my remission, my sister and I drove from Edmonton (AB)

to St. John’s, Newfoundland and back!

We really do live in a beautiful, diverse country.

In June 2019, the other shoe dropped, and I relapsed.

What did this look like? Over that year, my monoclonal proteins rose from 0 to 20. Two months prior to my relapse, I felt ill (like flu symptoms), and experienced extreme fatigue.

The week I relapsed I was in the BMT day care unit twice for IV hydration. Looking at my combined monoclonal proteins, bloodwork and lack of physical well-being, it was determined I had relapsed.

After 26 rounds of chemo (Daratumumab/ Revlimid/ Dexamethasone), I achieved “stable status” in September 2021. My oncologists use this term with me all the time.

For me, stable status means that my monoclonal proteins are staying between 1.7 – 3.0.

I continue to battle the side effects of the drugs but make sure I enjoy some quality of life, especially with my 4 grandchildren.

Me with three of my four grandchildren:

Cadie, Sasha and Eddie

Again, it was important to keep my brain engaged. In October 2018, I joined the

Southern Alberta Myeloma Patient Society (SAMPS) as a volunteer Secretary. After two years, I stepped into a Director at Large position to allow time to deal with other health issues. In September 2021, I stepped back in as interim Secretary until I resigned in March 2023.

When I was initially diagnosed,

I had been told I had 3 to 5 years to live, and then 5 to 8 years.

This past July I celebrated 9 years since my myeloma journey began.

Every day has been a gift that has been enriched by all the people who have touched my life and provided their love, support, and care.

I especially want to thank my two daughters Deanna and Kristie, their husbands, their husbands’ parents and my four grandchildren for always being there and stepping up when it counted. And, I would also like to thank Myeloma Canada for their extensive resources (knowledge is powerful) and their continuing support.

Deanna, Elise and Sasha

at the Multiple Myeloma March in Saskatoon, 2017

And now, I’m off to Invermere BC to celebrate my life with my family!

Beautiful!

Germaine

Editor’s note: Germaine, along with Anna Giulione (nurse at the Tom Baker Cancer Centre) graciously hosted a wonderful InfoWebinar for Myeloma Canada on June 27, 2023 entitled “Living solo with myeloma”. We thank them for their time and insights. In case you missed it, the InfoWebinar was recorded and is available for free viewing on our Myeloma Canada YouTube channel, or you can click here to directly access the recording.

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.

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.