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Spotlight on Kundan Uppal-Dubinsky:
Giving back and being grateful
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I was diagnosed with multiple myeloma at the very end of August of 2016. I was 54 years old but for sure I had been living with it for at least 2 years before.
In 2014, I suffered 2 vertebrae fractures. It happened at 2:30 in the morning in my sleep. I must have turned over because I woke up in excruciating pain. My husband George immediately took me to the emergency department.
They gave me morphine and then sent home.
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I went back to the emergency department about 4 times before a doctor finally did an MRI that revealed the 2 vertebrae fractures. Multiple myeloma wasn’t on their radar. They decided that I had early onset osteoporosis, I was 52. They did a bone density and other scans for osteoporosis and put me on weekly osteoporosis medication.
I could barely get around and needed someone to help me while my husband was at work. The fractures had me laid up in bed for 5 months. Finally, I started to walk with a walker, then a cane. It took a full year before I was walking normally. I was able to get back to the gym but not at all like I had worked out before. The vertebrae fractures left me with a pinched nerve in my leg and of course, a weaker back.
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In the summer of 2016, I was at an Indian wedding where it’s the custom to sit cross-legged on the ground. I couldn’t do it for more than 20 minutes. I was in so much discomfort that I took my sister’s suggestion to go sit on the bench at the back of the church.
Later that day, I felt like I had 2 'Charlie horses' in my buttocks just from sitting on the ground for 20 minutes! My husband took me to emergency and x-rays showed that I had two sacrum fractures and a pelvic fracture.
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Me and my dog with my sister-in-law and
brother-in-law at Crescent Beach, 2016
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That Monday, I saw my family doctor who was concerned and ran blood work…my protein levels were through the roof! That’s when myeloma finally appeared on his radar. He immediately booked me for a bone marrow biopsy and made an appointment for me to see an oncologist in case his suspicions were right. They were. I received my myeloma diagnosis and plans were made for me to start treatment.
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When my husband and I walked into that first oncology appointment, everything just went right over my head; I couldn’t absorb anything. Here you are and you’ve just been diagnosed with an unheard-of cancer. You’re a little bit freaked out. You’re going to have something called a bone marrow stem cell transplant, usually referred to simply as a stem cell transplant. It was very, very, scary. There’s no one to talk to, and you’re told at your initial consultation that you have 5 to 7 years to live…all I could think of is that this can’t be right.
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We don’t have cancer in my family. I’m the first one, so I never suspected anything like this to happen. And then to get a blood cancer that’s not curable, well it was just a complete shock. And what made it worse for me was the experience of not really having anyone to talk to who could relate to or understand what I was going through. It’s not like other cancers, and at the time, there were no networks to reach out to near me.
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Me, in August 2017 after my stem cell transplant |
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In hindsight, for several years before my diagnosis I experienced tremendous fatigue, but I really didn’t think much of it. I figured it comes with living a busy life and getting older. Now, I see that it was most probably the beginning of the myeloma.
After I was diagnosed, I underwent 6 ½ months of intensive chemotherapy in preparation for my bone marrow stem cell transplant on May 24, 2017.
Up until my diagnosis in 2016, I had never heard of multiple myeloma. At the hospital, there was no one to talk to. The hospital outreach program that pairs you with others with the same cancer that you have, was down. I was really left on my own.
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I started to do a lot of research. That’s how and when I found Myeloma Canada. I reached out many times for information and also spoke with Michelle Oana (Myeloma Canada’s Director of Development and Community Relations). I shared my frustration that, other than for her and Myeloma Canada, there was just no one for me to talk to for information and support.
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Michelle asked if I’d be interested in starting a support group and walked me through the steps of organizing a 'Meet & Greet' in Surrey; this was just nine months after my stem cell transplant. Forty-five people attended the meeting in my clubhouse. We had Dr Jesse Shustik, my present oncologist, as guest speaker; it was just fantastic!
I’m very proud of the work we did to make that event happen. I didn’t want other people to go through the experience I had gone through.
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From left to right: My sister-in-law, my niece, my sister,
and me after my stem cell transplant, 2017
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The thing that really got me through was getting in touch with Myeloma Canada, organizing the Meet and Greet, and creating the Surrey and District Multiple Myeloma Support Group.
Knowing I wasn’t alone; that there were other people to speak with, and for me to just give back. I felt “I’m alive, I’m doing well, and I don’t want anyone else to go through this alone.”.
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For me, being part of a support group is one of the most important and key elements of living with this disease. It’s knowing we have people to communicate and exchange with. Everyone is on a different treatment regime so you can ask the questions and learn from one another. |
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It’s where I know I’m not in this fight alone. I have the support and the information I need to stay strong. Sharing stories, experiences, discussing side-effects with people who can relate makes all the difference. It helps take the burden off your family too. No matter how hard your spouse or family try, there’s just no way they can relate in the same way as somebody who is also living with this disease. It’s also a great place for our partners to meet and communicate with others in their situation. The peer support we get from each other is amazing and has even led to friendships outside the group. |
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Today, the word that always comes to my mind is Grateful. I am grateful for the health care I’ve received since my diagnosis. The nurses, doctors and staff at the hospital are all wonderful and have looked after me well.
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My stem cell transplant was 100% a success and kept me in remission for 3 years. For this I am extremely grateful. I did relapse in February of 2019 and have been on daratumumab and I take lenalidomide every 21 days. I have fatigue, but overall, I’m doing well.
I’m grateful to be alive, to be with my husband, my family, and my dog.
I’m grateful that there are treatment options for me, so I can continue to live my life well.
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I’m also grateful for my support group and for being involved with Myeloma Canada. Participating at their Support Group Leaders' Summits you meet people who’ve been living with myeloma for 15 years, 25 years; it’s hope. Being educated through webinars, learning about new treatments with the group…it’s all positive reinforcement.
I’m grateful to participate at the annual Multiple Myeloma March and do what I can to help raise money for myeloma research. Last year, I was still in protective mode, so George and I decided not to join the group March in Burnaby. Not doing anything didn’t feel right so we did our own walk. Raising funds for Myeloma Canada so they can invest in new myeloma treatments and research is one of the most important things we can do.
George and I have recently moved to White Rock (BC) and we feel ready and excited to join the group March this coming October. It’s a great way to give back, to feel part of a larger community and meet new people.
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Me and my nephews, 10 years ago |
The Support Group Leaders' Summit in Québec, 2019 |
Me and George at our 2021 Multiple Myeloma March |
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Most of all, the Marches are an important way for us to help contribute to research breakthroughs and advocate for access to new treatments that keep us alive. |
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My friend Nicole and I before my diagnosis |
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Throughout Covid we’ve been very restrictive and diligent which has been really hard. I’m a very social person. I like to play my pickle ball, see my friends, and be out and about. When you have cancer, you want to live your life! You don’t want to waste any time.
We're not as isolated as we were but we’re still limiting our exposure and visiting with friends and family in our solarium outside and being as careful as we can. I’m itching to travel again, but I’m not quite ready, so we’re keeping it local and low key for now.
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My advice on how to stay strong and positive? Get involved! Give back! Share your story. If there isn’t a support group in your area, start one (ask Michelle how!). Join a Multiple Myeloma March in your area or do your own. Help others…it helps you too!
Stay positive and get involved,
Kundan
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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.
If you would like to share your experience in a future issue of Myeloma Matters, please contact us at contact@myeloma.ca.
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To donate to Myeloma Canada
please visit myeloma.ca or call us toll-free at 1-888-798-5771.
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Si vous préférez recevoir vos communications en français, écrivez-nous à contact@myelome.ca.
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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.
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