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Spotlight on Glenn Hussey:
My myeloma story
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Editor’s Note: 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 hope you enjoy meeting our 2021 Spotlight Stars and your fellow Myeloma Canada community members.
We recognize that everyone’s journey and experience with myeloma is different. If you would like to share your experience in a future issue of Myeloma Matters, please contact us at contact@myeloma.ca.
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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In 2006 at the age of 52, my family doctor sent me for what I thought was routine blood work. When he received the results, he referred me to a hematologist at The Ottawa Hospital because of what he saw. I subsequently met with the hematologist, had more blood work done, had a full body scan and also a bone biopsy.
The tests revealed that I had smouldering myeloma, and also chronic kidney disease with my creatinine levels elevated.
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My odyssey had begun. For the next 11 years, I alternated visits between the hematologist and the nephrologist. I had blood drawn every two months, but my numbers remained the same, so my appointments were short. After several years of this routine, I asked if it was possible that it [the smouldering myeloma] would never progress to full blown myeloma; I was informed that it was more than likely just a matter of time. Initially I started to research multiple myeloma but with the disease not progressing at that point, after a while I just put it in the background and lived my life.
I had always assumed I would eventually die from cardiac issues as there was a huge history of heart disease in my father’s family, with my father having passed away at the age of 48. It’s interesting to see how our perspectives change over time.
My wife had been quite ill over a number of years, ending up in hospital and in critical care. She had several strokes, as well as complications related to blood issues (antiphospholipid syndrome). From 2014 until her passing in July of 2017, she had been a patient of The Ottawa Hospital and Bruyère - Saint-Vincent Hospital. She had spent a number of weeks in intensive care, and had her right leg amputated due to blood clots. During that time, I acted as a caregiver for my wife, retiring from my 40-year career in the federal public service.
Meanwhile, I continued to get my bloodwork checked regularly.
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In April of 2017, at my regular hospital appointment, I was informed that my numbers had increased significantly and that I was required to start treatment immediately. I was informed that I had 2-5 years to live without treatment. Unfortunately, at this point my wife’s health was going downhill and she was in the care of the palliative care team. Because of this, I delayed the start of my treatment until late August, following her passing in July, 2017. |
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April 2018 having lost my hair from the melphalan treatment prior to my first transplant. |
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Not surprisingly, I finally felt the need to undertake in-depth research of multiple myeloma. Fortunately, that process was greatly facilitated by The Ottawa Hospital’s Myeloma Clinic as they provided me with an information package that included information about Myeloma Canada and the Ottawa/Gatineau Support Group.
I attended several Myeloma Canada Information Sessions, studied the Myeloma Canada and International Myeloma Foundation websites, and became a member of the Ottawa/Gatineau Community Network.
I was slowly becoming informed about my disease.
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I was started on the CyBorD [Cyclophosphamide-Bortezomib-Dexamethasone] regimen, but by December of 2017 after 4 cycles, my numbers had not been reduced to any significant degree. I was switched to Revlimid and Dexamethasone and my numbers came down significantly.
In the spring of 2018, I was introduced to the stem cell transplant team. As I did not have a caregiver who could transport me back and forth to the hospital daily for treatments, I was hospitalized for each of the two back-to-back transplants. In May I had my first transplant, then came home for the month of June, and returned to the hospital in July for my second transplant.
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While at the hospital, I cannot say I was significantly worried about my survival. I put myself in the hands of extremely capable staff. They helped me through the process, and always had positive outlooks while not hesitating to give me the bottom line. |
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Please note I am not making light of my difficulties with the transplants … the gastrointestinal issues, the 30-pound weight loss, feeling like I had been hit by a truck, lack of taste and/or smell, the transfusions, the isolation, and my near obsessive concern with blood clots, etc.
At the beginning of August, I was released from hospital and happily headed home. Unfortunately, overnight, I experienced chest pain, difficulty breathing, and a temperature of 104.
I was readmitted to the hospital the next morning and discovered that I had a pulmonary embolism and pulmonary infarction. It turned out that in my case, the cancer drugs tended to cause blood clots. During my journey, I have had one in my leg, one in my PICC line, and the pulmonary embolism. One week later, I was finally released for good.
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With my grandson Logan in August 2018, post-transplant celebrating my birthday. |
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Following the transplants, my lab reports showed only traces of the M protein. I was started on Revlimid and Ninlaro for maintenance. After a year, I was switched to Revlimid only for maintenance, and the Ninlaro was stopped. I have been told that I am in a state of stable disease. Officially, I have IgG kappa multiple myeloma, with high-risk FISH findings of p53, gain of 1q, and loss of 1p.
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Posing with my daughter Jessica, son-in-law Andrew, and grandson Logan following the Steps to a Cure Walk one month post-transplant (Sept 2018). |
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As I mentioned above, since my transplants, the results of my blood work have been relatively stable. I had been given a new lease on life. I wanted to do something to give back and to help out the myeloma community.
While I had retired from my public service career, I still had the energy to work as a volunteer. One month after my release from the hospital, I participated in my first Myeloma Canada Myeloma March. I also joined the Ottawa Community Network and found that interactions with other patients and caregivers were extremely helpful, informative, and an impetus for my continuing to volunteer.
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I have continued to participate in the Myeloma March, and I have been the Vice Chair of Steps to a Cure for the past two years. The opportunity to work with a team to fundraise for myeloma research is extremely rewarding. As a patient, I am pleased to be able to do anything I can to help other patients and/or caregivers. I volunteer as a peer in the Myeloma Canada/Wellspring Peer-to-Peer Program. I am also very privileged to be able to work with the members of the Patient Advisory Council (PAC) and to represent the patient perspective to the Board of Myeloma Canada.
I became interested in the Patient Advisory Council because I saw it as an opportunity to give back to the myeloma community, and to highlight patient and caregiver needs, issues and concerns. As a retiree, I can use my work experiences and background to help wherever I can. I also participate on the Ontario Advocacy Committee providing the committee with regular updates on the PAC activities.
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While I have a disease that currently has no cure, I try not to have the disease define who I am. I take life one day at a time. |
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Years ago, I had many long-term retirement plans. While the focus of my life has changed, I still have plans to travel, but they are now more near-term.
I have been referred to as a soccer fanatic. I love the game! I refereed for over 25 years. I played when I was much younger and was honoured to coach my daughter when she was just starting out in the game. I am a long time Manchester United fan, and am hopeful, post-Covid, of travelling to Manchester to see them play.
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Jessica, me, Andrew and Logan at Steps to a Cure, September, 2020 |
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My other passion is wine. I wrote about wine, taught wine appreciation classes, and led private tasting sessions. I am hopeful that my second post-Covid trip will take me to Bordeaux where I can sample some of my favourites!
In short, I like to keep busy. I work out regularly. I work part-time. I volunteer for Myeloma Canada. Life goes on. While myeloma has changed my life, I try to approach everything with a positive attitude, and refuse to slow down.
To quote the great Green Bay Packers football coach Vince Lombardi, “the measure of who we are, is what we do with what we have!”
Glenn
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