8 minute read
waldenstrom macroglobulinemia (wm) is a rare form of non-hodgkin lymphoma, a type of cancer that affects the white blood cells . it’s estimated there are 150 canadians diagnosed with wm each year and about 1500 patients in total . although not genetically passed on, doctors believe that paul may have inherited a susceptibility to the condition, eventually leading to this diagnosis.
can you tell me a little bit about wm?
it’s called waldenstrom macroglobulinemia. it’s a very rare bone marrow cancer that affects maybe 150 canadians each year. it’s not a very prevalent disease.
when were you diagnosed?
i was officially diagnosed in 2014. but i had some health problems in 2011 — there were clues that i had it. that’s just one of the issues with this disease: because it affects the bone marrow, and the symptoms come from the malfunctioning of the bone marrow, wm has a variety of symptoms. one person can have peripheral neuropathy, another person can have lung damage and another can have have eye problems. that’s what makes it really hard to diagnose. i think there are a lot of canadians who have waldenstrom, but don’t have a proper diagnosis.
advertisement
right now, to be diagnosed with wm, you have to have a bone marrow biopsy, which means that doctors have to grind through your hip bone. they give you a little local anesthetic. i remember as my doctor was leaning into me trying to push through, he said, you have awfully hard bones . and for the next six months, if i sat in a way that hit that spot, it would be painful.
you said there were clues that you had wm as early as 2011.
i got a lung infection in march which didn’t go away till june. and even though i had four courses of antibiotics, every time the infection would come back as soon as i stopped the antibiotics. [your body has] an infection fighter, called igg, and my levels were extremely low.
so you were fighting illness for years before you finally got your diagnosis. what went through your head when you found out?
i felt that i was really lucky. my mother was diagnosed with wm in the late ’70s and she didn’t have any treatments at all. she had a lot of blood transfusions, which really is a form of palliative care.
advertisement
when i was diagnosed, i was told there are different options, different treatments. i thought, this is way better than my mom’s [experience]. i was very fortunate that i knew what wm was, and also because i thought it was positive that there were so many treatments.
is wm an inherited disease?
no. what i inherited from my mum was the susceptibility of the particular mutation happening [that causes wm]. every one of us has mutations every single day, but most of our bodies are able to find it, get rid of those incorrectly made cells, and move on. but not in my case.
it’s hard to imagine getting diagnosed with cancer, especially the same cancer that caused your mother’s death, and feeling so positive.
i kept thinking about my mom who didn’t have any treatments, while i had access to a lot of options. i’ve lived with this disease for 10 years and i’m still living a full life. it doesn’t terrify me — it’s just something that’s going to be inconvenient. i’m going to live with it for a long time, and i’m planning to die with it, rather than from it.
advertisement
tell me more about how wm is treated.
the first treatment i had was chemotherapy: a 17-week program where i went to the hospital and had chemo once a week. it was not that heavy, i didn’t lose my hair. i was tired, but i don’t think i ever missed a day of work. i was living on the school campus where i was teaching — it’s a little boarding school — and i remember sneaking home for lots of naps.
did you share your disease with your students?
yes, we have a little community chapel service at the beginning of every day, and one day, i just told them that in life, there are things you have to go through and sometimes there’s tragedies and sometimes there are inconveniences, that sometimes when we get a bruise or a bump, we get a little too emotional. i told them that this is something that i have — it’s a bump in my road — and that we were not going to have any tears. ‘if one of you has a car accident and doesn’t come to the school the next day, that’s a tragedy,’ i said. ‘what i have is a bump.’
advertisement
are you doing chemo now?
no. at the beginning of last summer my hemoglobin dropped, and i knew i needed to go back into treatment. i started on taking one of the new treatments — called a btk inhibitor — and my hemoglobin got better, but i had also had a bunch of side effects. i used to have atrial fibrillation and [it came back with this medication]. that was devastating. so in march of this year, i switched to a second generation btk inhibitor that was just approved in canada, and my hemoglobin has continued to go up but my atrial fib has not come back. i’m still really tired, though, which is frustrating. i’m a pretty active guy, and now i get fatigued frequently. i was doing some work around the house and i had to lie down for 15 or 20 minutes just before the interview. i don’t have that stamina that i used to have. but in terms of everything else in life, it’s pretty good.
what does it feel atrial fibrillation feel like?
it’s when your heart beats irregularly. lots of people live with it, no sweat. sometimes they know they have it, sometimes they don’t. mine just felt awful.
you’ve been up to quite a bit recently to support the wm community.
when i retired from the school i was asked to join the board of the wmfc, which is the
waldenstrom macroglobulinemia foundation of canada
. i did that, and unfortunately the leader had decided to leave and so i ended up as chairman of the board for a little more than two years. i stepped down last may, just because that’s when i was switching treatments, but i’m still on the board. i’m happy — i think the more people that know about wm, the better off we are. and the more doctors who hear about patients with wm, the better off we are. so i’m doing as much as i can.
advertisement
more information on waldenstrom macroglobulinemia and resources are available on the waldenstrom macroglobulinemia foundation of canada website and the the bing center homepage.
advertisement
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on twitter @jonesyjourn
