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how i care for multiple myeloma: 'i want to believe there will be a cure in our lifetime'
7 minute read
sass khazzam is a caregiver to his wife sharmeen, 69, who lives with an aggressive type of multiple myeloma. supplied
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every day, 10 canadians are diagnosed with multiple myeloma — a rare type of blood cancer that develops when abnormal plasma cells collect in the bone marrow. and although there is currently no cure for the disease, thanks to research advances, many treatment options are available, including clinical trials that offer additional hope to patients at every stage of the disease.
sass khazzam’s wife sharmeen, 69, lives with an aggressive type of multiple myeloma. to help control the disease, she received a tandem autologous transplant — two transplants within a six-month period — and is currently on maintenance therapy. sharmeen’s experience with cancer inspired sass to get involved in fundraising that helps to accelerate multiple myeloma research. since 2016, he has participated in princess margaret’s journey to conquer cancer as part of the mm5k team.
in an interview with healthing, sass shared how he navigates the ups and downs of caregiving and his advice to others who might be going through a similar experience, how being involved with the myeloma community unexpectedly led him to a new venture that helps others living with cancer, and why he is cautiously optimistic about a cure for multiple myeloma.
this interview has been edited for length and clarity.
prior to your wife’s diagnosis with multiple myeloma, you had no familial connection to cancer. who did you turn to for support in those first few weeks after she was diagnosed?
we reached out to anyone and everyone we knew, and we soon learned that there were people we knew of that had multiple myeloma. sharmeen, myself and our children accompanied went to the princess margaret cancer centre to meet with an oncologist and learn about the treatment plan. i also did research on my own — the danger there is that if you look in the wrong places, you can find all sorts of wrong information. you need to be very careful about that. i found information through cancer centres that specialize in blood cancers or myeloma, and i would encourage others to also seek information through credible sources, not just online.
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what did the initial treatment look like for sharmeen?
the first treatment regimen was brutal — her entire immune system was completely wiped out [by chemotherapy]. it’s a very difficult few days until the body starts to rebuild its immunity again and it requires an average of three weeks of daily visits to the hospital. during this time, the body is completely immunocompromised, and it’s not hard to catch something the body has difficulty fighting. my wife had to have a tandem autologous transplant because the type of myeloma she has is an aggressive form — the transplants happen one right after the other.
how does that compare to the maintenance therapy she is currently on?
my wife requires chemotherapy every two weeks, and naturally, chemo has other effects. this is done on an outpatient basis at the hospital, and she often doesn’t feel great for 24 hours afterwards. there are disadvantages to having chemo that often, but there are obviously advantages in terms of managing the cancer. covid made treatment that much more difficult, but luckily, it didn’t delay her treatment.
what’s the toughest part about being a caregiver?
we’re still at the stage where sharmeen carries on physically with virtually no restrictions, so i don’t think of myself as a caregiver. emotionally, it’s quite different, knowing what ultimately lies ahead.
how do you deal with the ups and downs?
i am the type of person who deals with things by being directly involved in all facets. obviously, there are times when i get emotional about it. i feel bad for my wife — no matter how happy she is or how blessed we feel that we have our life, and our wonderful children and grandchildren, the cancer is always there. and while it is there for me too, i can at least compartmentalize it.
do you worry about what’s next?
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my hope is that whatever treatment protocol comes next, that it will last as long as possible and that my wife will be able to tolerate it. i have not followed up on the latest research because the treatment plan my wife is currently receiving works well, and i don’t want to use up my energy following research that may not be relevant to her in the future. this is a complex disease and staying on top of everything can be mentally and emotionally exhausting. this past spring, i was invited to speak at a princess margaret webinar where i also had the opportunity to learn about the latest myeloma research. i was blown away — there has been more research progress in multiple myeloma than any other type of cancer. that gives me a great deal of hope for the future.
how did you get involved with the myeloma community in toronto?
myeloma is a rare form of blood cancer, and it doesn’t get the funding it needs compared to other more common types of cancer. this is why i felt it was necessary to get involved in the princess margaret’s journey to conquer cancer as part of the mm5k team, which is now in its 18th year. every year, i make a personal donation and i reach out to a large group of people who i ask to donate to the cause. this is something that i am still not comfortable doing, but i have been fortunate and pleasantly surprised that so many people have been so generous in supporting the cause. my attitude is that my wife has this disease, and i am going to do whatever i can to make a difference. this year, i’ve raised more than $70,000 and since 2016, more than $400,000.
the myeloma community has also led you to something else you’re passionate about.
i would go to the princess margaret cancer centre with my wife for her treatments, and when she had her stem cell transplant, i had the opportunity to interact with other people, some of whom came from different parts of the province because it was the only place where they could receive treatment. because of my involvement in fundraising, my wife’s oncologist reached out to me in early 2019 to tell me about a charity that helps the blood cancer community from out of town find accommodations in toronto. i met the two individuals who started it and i decided to get involved. i am now the co-ceo of the staywell charity. it never would have dawned on me, but there are people who, in order to be treated, have to relocate temporarily, and many can’t afford to do that.
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how many people have you assisted through the charity?
through staywell, we’ve provided more than 23,500 subsidized accommodations to people who needed it. the demand across canada is three million nights and that’s a staggering number that tells us that people all over the country need help. no canadian should ever have to turn down cancer treatment because they can’t afford to find affordable accommodations. we work with all the major toronto hospitals, and we have contracts with condo owners that would have previously been used for corporate housing. that’s where a lot of the inventory comes from — from contracts and available space — but we now also have partnerships with hotel chains for shorter stays. the rates are incredibly affordable, regardless of whether someone is staying in toronto for treatment for three days or 30 days.
what advice can you share with other caregivers?
when my wife was diagnosed, we were introduced to a support group, which i would encourage everyone to look into, because as much as the medical staff can provide you with support and information, i can’t emphasize enough how much can be learned from individuals and caregivers who have been there before. i spent quite a bit of time going to meetings and i learned a lot about how people feel through their loved one’s cancer experience. but everyone is different, and you have a whole gamut of reactions. my wife chose not to attend any of the support group meetings — it was her way of dealing with it. i really don’t believe in giving other people advice because caregiving is a unique experience. but what i would say is don’t give up hope and try to learn from others. we’re still learning from people who are there and how they’re dealing with their cancer experience.
do you believe that in our lifetime, there will be a cure for multiple myeloma?
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i believe that the funds we’re raising at events like the journey will lead to research advances that will save more lives in the future. i want to believe that there will be a cure in our lifetime, but the question is: what can we reasonably expect given the complexity of this disease? i’m a realist, but i’d like to be proven wrong.
do you have a caregiving story? email info@healthing.ca.
maja begovic is a toronto-based writer.
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