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what it feels like

diffuse large b-cell lymphoma: what it feels like

"i called in sick to work that night and didn't go back for 13 months."

by emma jones

oct 11 2022

10 minute read

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what does it feel like to have diffuse large b-cell lymphoma?

jennifer holmes and her friends were able to fundraise $8,000 last year for the leukemia and lymphoma society of canada's light the night fundraiser. supplied

jennifer holmes, an emergency room nurse at st. michael’s hospital in toronto, noticed a lump on her breast one day while showering. fearing it was breast cancer, her doctor sent her to the princess margaret cancer centre, but the diagnosis was not breast cancer. instead, holmes was told she had d iffuse large b-cell lymphoma (dlbcl).

diffuse large b-cell lymphoma is the most common form of non-hodgkin lymphoma, according to the canadian cancer society. these cancer cells tend to be larger than other lymphocytes ( white blood cells ), and are often found scattered throughout the lymph nodes and surrounding tissue. although it is known as an aggressive form of cancer, it tends to respond well to chemotherapy.

the canadian cancer society estimates that 11,400 canadians will be diagnosed with non-hodgkin lymphoma this year, and approximately 3,000 canadians would lose their lives because of it. approximately 65 per cent of patients, will survive five years or more past their diagnosis (five-year survival rate).

during her time in treatment, along with her friends, holmes raised approximately $8,000 for the leukemia and lymphoma society of canada’s light the night event, and was named an honoured hero for her efforts.

holmes spoke to healthing about treatment during covid, coming to terms with the side-effects of chemo, and returning to nursing during a critical period in canadian health care.

this interview has been edited for length and clarity.

what led to the diagnosis of diffuse large b-cell lymphoma?

at the end of march 2021, i was in the shower and found a lump in my right breast. my first thought [was that it was breast cancer]. when i found it, i shed a few tears and had my moment of being upset, and then i started picturing myself going through the breast cancer journey, and asking myself things like, do i need a mastectomy? hormonal treatment?

i called my family doctor right away. but i totally thought that [breast cancer] was the way it was going to go.

at princess margaret, they saw the lump on the mammogram, and then they referred me for an ultrasound, and then i had a biopsy — all in the same day. [from finding the lump to getting the biopsy took] five days.

that’s so much terrifying information to get within a week. what was going through your head?

i think it was probably better for it to happen that way. to be honest, the only people who knew what was going on were my sister and my boyfriend; i actually didn’t tell my parents because i didn’t want to worry them until there was something to worry about. i think part of me knew there was something going on, but what it was going to be, i didn’t really know.

the next week, i was on my way back to the hospital to get the results and the nurse practitioner called me. she said it wasn’t a breast cancer, but that they think it might be a lymphoma. and at that point, i told my boyfriend to turn the car around, and i was in tears. i just kept saying, i knew it, i knew it was cancer. i knew it. i knew it. and he just kept saying, it’ll be fine. it’ll be fine. it’ll be fine.

she said she would be referring me to an oncologist/hematologist at princess margaret and then i would find out what kind of lymphoma it was and details about the treatment. i called in sick to work that night and didn’t go back for 13 months.

you have medical knowledge. was it difficult to know all the possibilities? or did you feel more empowered?

sometimes it’s not great to know as much as you do. but i think the other part, for me, is that working in an emergency department, i always saw the bad side of everything. the patients who would maybe have my diagnosis were, for the most part, a bit more ill or in a palliative state. you come to the emergency department because that’s how sick you are. you don’t come to the emergency department when you’re well. so i think i may have had a bit of a skewed image of where this illness could lead.

and to be honest, getting my treatment at a focused cancer centre helped me in the process, because you saw a huge range of patients, good and bad, in their conditions.

the canadian cancer society estimates that 11,400 canadians will be diagnosed with non-hodgkin lymphoma this year. getty

what was the treatment like?

diffuse large b-cell lymphoma has a high cure rate. it’s considered to be an aggressive type of cancer but, apparently, that makes it more responsive to treatments.

before chemo, a ct scan of your entire body is done to look for any spread of the cancer. next is a pet scan, [which] is basically a nuclear scan that again looks for tumours in other places. i was lucky that it hadn’t spread anywhere. i was considered in early stage, even though the tumour itself felt quite large.

i was booked for chemo the next week — may 3, 2021 was my first treatment. basically, the pharmacist gave me a booklet of, it must have been six different medications that i was going to have to take.

every week when i started the chemo, i would take quite a large dose of steroids in the morning — about 100 milligrams of prednisone. i also had to take anti-nausea medication in the morning before chemo, as well as tylenol and benadryl because one of the medications came with a risk of having a reaction to it. the first time i took the prednisone, i got super flushed and my heart started racing. i felt awful. but my body got used to it after a while.

the first week was tiring and a bit rough, and the next week was a bit better. by the third week, before i went back for my next round, i actually was able to go out and play a round of golf. normally i would be out on my bike, but i wasn’t allowed to ride because the treatments lower your platelet count and if you fall you could bleed and have a bad injury.

my hair had also started coming out in clumps. when i was in the shower, there were handfuls falling out. it’s so devastating to have that much hair in your hands. i had bald spots — my hair was down past my shoulders. it was actually more emotionally damaging than just shaving my head. so the next day, my sister and i went into the backyard, took the clippers and cut it all off.

it actually felt good because my head was irritated. it was peeling and red and itchy — it was awful.

so, i started wearing scarves and more hats. my sister knows some people who work in businesses where they make wigs, so i connected with them and got a few wigs made. the wigs were great. not always the most comfortable, especially in the stifling hot summer, but they were good for those times when i wanted to go somewhere and not have everyone know what was going on with me.

were you able to see your family during this period?

because of the pandemic and being in health care, i actually hadn’t seen my family in over a year — except for my sister, because we live together. i hadn’t seen my parents, or my grandmother. i hadn’t seen anyone in a year. that was not easy. there were more phone calls than usual, [and] by the time i got around to my second treatment, it was decided that i had to visit my parents.

i was lucky that my sister was working from home at the time, so she was able to be here and help me if i needed it. the first week after my treatments, i was pretty much in bed with a tv in my room, napping on and off. you just don’t really have energy.

were there other treatments after your chemo?

after my chemo was done, i was referred to a radiation oncologist. i really didn’t want to do radiation — i was hoping i was going to get away without it because after my second treatment, the tumour was actually gone. it couldn’t even be felt. i had another pet scan after the last chemo treatment and they said everything was clear. but because where the tumour presented wasn’t usual, there was a bit of concern that it could be aggressive.

i was worried about the risk of radiation — the chance of a radiation-related cancer down the road. it could present in 15 or 20 years, or it may never happen. that started playing in my mind.

i held the appointment and i had a very clear conversation with a radiation oncologist about my concerns, and she said that she understood, that the radiation would be the lowest dose. she also said that since there aren’t a lot of studies with lymphoma that presented the way mine did, the benefits outweighed the risks.

it was so hard. i probably could have still declined it. this was the one decision i had a really hard time making. but, what if in 20 years …? [but] if it happens, it happens. we’ll figure it out then.

what was it like to have radiation?

there’s a lot of times during this whole experience that you’re very exposed and vulnerable, especially when the cancer is in a location where it [was on me]. i had to lie on a ct table, fully exposed on that side of my chest, and they put four little black dots — tattoos — on the area to make sure the radiation lands in the same location every time.

unfortunately though, the tattoos are a constant reminder.

i went through this process without any real scars or visible evidence other than losing my hair, which is kind of nice because no one wants to be reminded of cancer every day. or maybe you do, because it’s a reminder that you overcame something.

the radiation was probably a little worse than the chemo.

about two weeks into the three week treatment, i was doing ok — i was putting cream on my skin every day because radiation is a little like getting a sunburn. by the third week, my skin was red and blistering. it probably took a good two to three weeks [to heal].

although diffuse large b-cell lymphoma is known as an aggressive form of cancer, it tends to respond well to chemotherapy. supplied

once you’d finished radiation, what happened next?

now i am just under surveillance for five years. i go for appointments every three months; it alternates between my hematologist and my radiation oncologist.

how long before you went back to work?

the day i left work was april 12, 2021. i went back on a gradual return to work on may 10 , 2022. i actually thought i would go back to work around january and they were like , oh, heck no . i really didn’t realize how much radiation takes out of you.

unfortunately, there was no easing into anything because of the situation that nursing was in when i returned with covid still happening. i was still experiencing some shortness of breath, so trying to work in full ppe gear and in an n95 mask was quite challenging.

it was also hard to get back into the routine of working shifts. i wasn’t sleeping well at night, and then trying to work a 12 hour shift without getting the breaks that you need, with no time to eat the way you should. it wasn’t going be a great basis for recovery. it came to a point where i was becoming very emotionally exhausted. i wasn’t dealing well with the behaviours of patients, visitors, and we were so short-staffed — there’s the expectation of working as three people. i’ve been in my department for 20 years — i always kind of saw myself as a lifer. but i had to make a decision — which was not easy for me — to think about maybe trying out another role. i had to figure out something that was going to work better for my health.

i was never one to put myself first. i always stayed the extra half-hour when it was busy. i always took extra shifts. as a nurse, you put everyone else’s needs before yourself, so it was a very bizarre concept to put myself first.

you raised a considerable amount of money for the light the night event last year — what got you into this?

i was scanning the internet and came across this event for the leukemia and lymphoma society of canada because i was [looking for] something to help me give back. growing up, i was always involved with fundraising and things like that. so i looked into it and found out about a fundraising walk that was coming up.

we then made up a team with a bunch of my friends — people from work roles also wanted to get involved. we were able to fundraise $8,000 last year, within about three weeks. again this year, we’re on our way to almost $10,000. it’s great — it benefits not only lymphoma, but all types of blood cancers, so that hopefully, everyone can have the same success story that i did.

the annual light the night event happens this year on oct. 22. readers interested in finding out more about lymphoma can visit the leukemia & lymphoma society of canada and the canadian cancer society.

emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn .

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