what it feels like: facing leukemia, recurrence and the ripple effect on the people you love
9 minute read
those early days in her cancer journey, and the years of debilitating treatment that followed, inspired her advocacy work with the canadian cancer society for access to care, and a self-published book on cancer survival so others who face a similar diagnosis feel less alone.
supplied
stay up to date on this topic
reviews and recommendations are unbiased and products are independently selected. postmedia may earn an affiliate commission from purchases made through links on this page.
family is often what grounds us and keep us from falling off the edge in the worst moments. surviving cancer has been tough for jennifer mitchell, but it wasn’t losing her hair or the debilitating fatigue and nausea of chemo that haunt her.
it was telling her husband that her leukemia had come back.
“when he walked into the house and he looked at me, he knew. he is a strong man, and he broke down and cried. i have never heard him cry. that broke my heart to have to tell him that we had to go through it all over again,” she says. “and he said to me, ‘we did it before. we will do it again. i will be by your side the whole time.’”
diagnosed with leukemia
back in 2016, jennifer was a healthy, active 40-year-old who liked to golf, snowshoe and take walks with her little dog chip. she had a job she enjoyed, helping families settle their kids into campus as manager of student housing at the grenfell campus of memorial university of newfoundland in corner brook, where she’s lived all her life. then out of the blue, she started getting pain in her hip. she thought she must be sleeping in a different position, or it was just a random ache. but it persisted.
“i made an appointment with my family doctor just to get her idea on what it could be. and at the time, she didn’t think there was anything wrong with me,” jennifer explains. her doctor recommended physiotherapy and massage which she did for a few weeks, but it wasn’t getting better. “i couldn’t do anything to resolve the issue. and it was getting to the point where i couldn’t go to work. i wasn’t sleeping properly and just in a lot of pain.”
she finally decided to go to hospital and was admitted the same day, with doctors baffled by the cause. they thought it might be a joint infection or fluid in her joint that was infected. she stayed in hospital for the next five days for multiple tests and blood work.
advertisement
“that last day i was in the hospital, i’ll never forget, i had just woken up. the internal medicine doctor came in and she said that it looks like it could be leukemia or lymphoma. i was by myself, no family around, and i’m not a morning person, so it took me a second. and then i was like, ‘wait, those words mean cancer.’” she recalls. “tears started streaming down my face, and she could tell that i was really distraught. so she said that she would come back when my family came back that day. then it was like, okay, here we go.”
she was flown to st. john’s for a bone marrow biopsy to test the fluid and tissue to determine if cancer is affecting blood cells or marrow, as well as the extent of the disease. her husband alan drove in and that first night they went for a short walk around the hall of her hospital floor and noticed that all the posters on the walls were cancer related – but no one had told her that she was going to the cancer wing. “we both looked at each other and he was like, ‘i think you’re on the cancer wing. and i was like, yeah.’ and that was a moment as well.”
jennifer talks about the impact of not knowing what to expect, and how more information and support would have helped, even with problems of staff shortages and limited time for preparing patients for what’s ahead. those early days in her cancer journey, and the years of debilitating treatment that followed, inspired her advocacy work with the canadian cancer society for access to care, and a self-published book on cancer survival so others who face a similar diagnosis feel less alone.
“when the doctors finally told me that i have cancer, i have leukemia, i kept asking the doctor, ‘is this curable? am i going to die?’ they kept reassuring me that it’s treatable and curable,” jennifer says. “i still had a lot of doubts, but for me, and i tell people this, i never thought of giving up. my mindset was always, i’m going to get through this. i want to get through this. i am not finished.”
advertisement
she had acute lymphoblastic leukemia, or all, a rare blood cancer that affects a type of white blood cells called lymphocytes, where the immature white blood cells (lymphoblasts) produced by your bone marrow mature into healthy lymphocytes that help fight off viruses and bacteria, notes the cleveland clinic. but what happens in all, leukemic lymphoblasts don’t mature and rapidly multiply, moving from your bone marrow to your bloodstream and other areas of your body. as the canadian cancer society says, 51 per cent of people with all will survive for at least five years. about 40 to 50 per cent of people with all reach a complete remission and do not relapse.
“i look at life with a very different perspective now,” jennifer mitchell says of her journey with leukemia.
supplied
leukemia treatment and the path to remission
jennifer was on the other side of that 50 per cent success for complete remission. she went on leave from her job and spent eight months in st. john’s receiving chemotherapy, a combination of drugs by intravenous and pills, with the first six weeks as an inpatient in hospital. she had a port put under the skin of her chest to receive treatment, and a hickman line that can hold three iv lines at a time: “a lot of the times, those three ivs were going,” she says of drug treatment. “it was hard. it took a toll on my body. i was extremely fatigued from the chemo. i lost my hair. i was hospitalized many times for infections.”
because she couldn’t get treated in corner brook, she had to stay in st. john’s to go back and forth to hospital. her husband wasn’t able to get the time off work from his sales job at a recreational vehicle dealership and had to quit to be with her. financially, her cancer has been an uphill battle with out-of-pocket costs now totalling about $12,000.
but you have to focus on the positives, she says, like staying at daffodil place, the canadian cancer society lodge in st. john’s, designed to provide affordable accommodations for people going through cancer treatment. they had elevator access, so if you couldn’t walk because you’re tired from the treatment, there was an elevator with wheelchairs available if needed. they had counsellors, the front desk was staffed 24 hours a day, they had wigs onsite.
advertisement
“they really thought about all the needs of a cancer patient, everything. and the best thing was you weren’t alone. everybody there had their own experiences with cancer. they all knew the feelings, the dread associated with a cancer diagnosis. so, when you went downstairs for breakfast, you could talk to other people who knew what you were going through. it was a huge support system there.”
jennifer also says her husband and family kept her going. “my parents came into st. john’s every two weeks faithfully to stay and they would stay for a week or two weeks, and they would be there for me. and my husband was with me the whole time. they would be there to support me and to help me through and give me something to smile about, whether it was taking a car ride or seeing my puppy. they were my cheerleaders.”
after the eight months in st. john’s, she was able to go home. her maintenance chemo for the next two years was a series of pills and once a month in hospital for an iv session. after about six months on maintenance, she was able to go back to work as well – with a huge sense of relief coming at the two-year mark.
“it was pretty much, i am done and i am in remission. and the chances of seeing it again were very slim. the doctors always told me that there is a chance, but the further out you get from the actual diagnosis, the better. i was back to living a somewhat normal life, you kind of trudge forward for a little bit and get used to this and feel confident again. i felt like i was on top of the world.”
recurrence: the impact on family and a new perspective
then in august 2021, her leukemia came back. she and her husband were on vacation, traveling around newfoundland when she noticed an odd feeling in upper back. soon after, she was waking up in the morning drenched in sweat, a symptom that she had when she was initially diagnosed. she decided not to wait to get into her family doctor and headed to the er. her blood work came back without concern and the team ordered a ct scan just in case, asking her to follow up with her family doctor for the results. she thought everything was fine.
advertisement
“i went to the doctor’s appointment by myself and didn’t think anything of it. and i get in the office and my family doctor comes in and she had my test results and i said, ‘did anything show on my ct scan?’ and she was like, ‘you didn’t get the results?’ then she said, ‘i hate to tell you this but your cancer’s back.’”
the shock put her into a tailspin of fear about the future and the blow to her family all over again. “people don’t realize that yes, obviously cancer is very impactful on the patient, but there’s also the emotional and financial impact that it has on your family and caregivers.”
she met with her hematologist in st. john’s to talk about starting treatment with three months of immunotherapy, the personalized drug treatment that targets only the cancer cells. she also learned that she would need to go to ottawa for a stem cell transplant from a donor – her only hope of surviving leukemia. the procedure replenishes the blood stem cells in the bone marrow so they can go on to produce healthy new blood cells.
“i thought it was a relief that i didn’t have to go through that hard, hard chemotherapy again. but then the unknown is also just as scary,” she admits. “the risks associated with stem cell transplants are quite high, so you attend an information session, and you fill out documents about power of attorney. they suggested i get a will in order. it was scary. but i had no choice, i was facing life and death at that point.”
after the transplant, she and her husband returned to st. john’s for her follow-up care and monitoring. she was extremely immunocompromised and couldn’t stay at daffodil place or any residence with other people. the couple rented an airbnb and went to the hospital every second day for blood work. she struggled with eating and drinking at the beginning of recovery, and she often needed fluids and potassium by iv at the hospital to help her heal and get strong. the weeks felt long but she got through it and in march of 2022 they were home again, ready to start fresh.
advertisement
“i look at life with a very different perspective now,” jennifer says, pausing to put her thoughts into words that will resonate.
“i don’t take my work home with me anymore. before cancer happened to me, i identified as what i did. i’ve been working in student housing for 22 years. i identified as the manager of student housing. now when somebody asks me about myself, i will say ‘i’m a cancer survivor. i work at grenfell campus, and i enjoy golfing, curling, i enjoy traveling. at the end of the day, i can walk out of the office and leave it there. what’s most important in my life now is outside of the job.”
share story
