“For more than two decades, running has been a major part of my life. When I started experiencing unexpected pain and soreness on my runs, I initially brushed it off as just a part of getting older.
Then, during the early weeks of my first (and only) pregnancy, I felt such excruciating pain after a long run that I found myself doubled over and unable to stand. At the emergency department, they told me it was likely a dislocated spinal joint related to running, and advised me to see a physiotherapist and take it easy.
The pain persisted in my back, but I chalked it up to the injury and normal discomforts of pregnancy. But then my little guy, Bennett, was born in September of 2020, and the pain didn’t go away.
At Bennett’s one-month check-up, I was leaning against the walls of the doctor’s office just to stay upright. I couldn’t feel anything from my mid-back down. I knew something was seriously wrong but was terrified to go to the hospital and be separated from my brand new baby while I was breastfeeding.
My son’s doctor wasn’t having it, though. When he couldn’t convince me, he turned to my husband, Brett, and said, ‘She needs to go to emergency right now.’
At the hospital, the scans immediately revealed that my back was broken. I told them that was impossible. I hadn’t even fallen. But it was possible, because I had a massive tumour that had broken my vertebrae and was compressing my spinal cord. The results came back with a diagnosis of diffuse large B cell non-Hodgkin lymphoma (DLBCL), an aggressive blood cancer that requires equally aggressive treatment.
I made a conscious choice to avoid reading any statistics or talking to anyone about prognosis or survival rates. If you go online looking for bad news about DLBCL, you’ll find it very quickly. I didn’t want to know. I was just focused on how my little boy needed me to get better so he could have a mom.
What I did need to know, though, was what my treatment was going to look like. I learned that I’d need nine rounds of chemotherapy and a major back surgery, and that my immune system was going to be totally wiped out, right in the middle of a global pandemic.
“…it made it really clear to us, right from the start, how essential community is in getting through a health crisis like this.”
The fear that came with being immunocompromised at a time when we still didn’t really understand COVID-19, combined with the complete isolation, was overwhelming. There were times when I was fully hospitalized for treatment, and I was completely cut off from everyone, even Bennett. Nurses came in fully covered in protective gear, and it felt like the world had closed in around me. I missed my son’s first Halloween.
And Brett, at home with Bennett, was the COVID lead for the school district, responsible for helping 150 schools navigate the pandemic safely. He didn’t get a single day off that entire year. What completely saved us was our network of family, friends, and even neighbours. One neighbour didn’t bubble with anyone, just so that she would be able to come over and help with the baby while I went to chemo appointments. We’re so grateful and it made it really clear to us, right from the start, how essential community is in getting through a health crisis like this.
I’ve been in remission for three years now and I finally feel like I can put my whole self into being a mom, into raising and teaching and loving this little boy. At the same time, I know many others with my diagnosis aren’t as fortunate. There are young parents with blood cancer who never get the opportunity to come home healthy to their children.
Doing right by those patients — and building a robust community for everyone — is a big motivator for me now. It’s why I put so much effort into advocating for blood cancer research and awareness. We’re so close to having a cure for these cancers that affect so many, including a heartbreaking number of children. I feel a duty to help now, by the simple virtue of still being alive.
I’m also aware that I’m not out of the woods, and that I never will be. I’ve met quite a few people who have been in remission for two years, 10 years, even 20 years from DLBCL only for it to come back with a vengeance.
But dwelling on that possibility doesn’t help me at all. The best I can do now is focus every day on being a mom. We don’t know how many days we have left, but we do choose how we spend them. And I’m spending mine basking in the joy of my family.
Oh, and I’m running again.”
Return to the Immunocompromised Voices collection.
The Canadian Immunocompromised Advocacy Network (CIAN) is working to unite and amplify the diverse voices of immunocompromised people living in Canada. In doing so, it envisions a world where immunocompromised people can thrive in safer, more inclusive communities. If you’d like to get involved with CIAN, either as an individual or a group, sign up here.
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