Mark Opauszky
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More Than Our Story
Tabitha Holman
Tabitha Holman, a teacher, and mother of two, shares her experience with metastatic breast cancer and the many challenges she has encountered within the Canadian medical and education systems. She also discusses her advocacy efforts and emphasizes the need for reform to the current standards of care for breast cancer in Canada.
Highlights
It was the first time I was away from my baby... (I was pumping) it was then that I first found the lump. Naturally, you think, okay, it's probably a blocked milk duct... When I brought him to the doctor, and I brought it up, the same thing was reiterated: "You're breastfeeding. This is normal. Don't worry about it."
I was born with a heart condition, and things came to light while I was pregnant, so I was being monitored a lot. I brought it up to my cardiologist and the technicians running the scans on me. Every time, because it was in my left breast over my heart, they said, "Oh, lumps are normal."
When I stopped breastfeeding and noticed I had swollen lymph nodes, I was able to get an ultrasound. That didn't really show anything; they said it looked like an infection.
I pushed and pushed because, at the time, I was too young to get a mammogram in Ontario, and I was low risk, so I didn't qualify.
I finally got a mammogram. They turned on the machine, and they gasped. I knew at that moment that it must be cancer... My world just fell apart.
Part of my coping with things is just trying to handle it in the way that I do and talk about it openly. Maybe that's the teacher in me... That's just part of my training and part of my personality.
On initially having to pay out of pocket for chemotherapy:
I have what's called HER2-positive, hormone-negative breast cancer, which is a rare subtype of breast cancer (that's) not fed by hormones, so hormone blockers wouldn't work for me... and because of my heart condition, they were going to have to give me a different chemo from the standard of care.... in Ontario, that's not covered... So suddenly, I was hit with trying to figure out how to pay for it.
Initially, the province denied it... and then my insurance denied it. I tried to appeal it with my heart condition and still got denied. I was sent to the Trillium Fund to try and get funding. They agreed to cover half.
When I got upgraded to Stage IV, which is obviously the last place somebody wants to end up, Perjeta was now covered, which is frustrating for anyone with early Stage II HER2-positive breast cancer because it can really cut down on reoccurrence.
I just filled out a patient advocacy letter to try and advocate for Perjeta to be available to people with earlier-stage breast cancer.
It was just crazy because I was just there. You have cancer, and now you gotta figure out how you're going to find your cancer treatments. I was running around to different offices, making calls... You get the worst news of your life, and then you're given homework, like? It was awful.
The frustrating thing about this type of cancer is that the brain lesions are common... So now, every two months, they're going to give me an MRI to check and see. If they pop up again, more Gamma Knife, and if they don't pop up, no Gamma Knife.
Some drugs are in trial right now that do (help with brain lessons). Unfortunately, I tried to get into a clinical trial and I just missed the cut off. They have a medication that they can give me right now with my treatment that can prevent it from spreading to my brain. I'm a sitting duck waiting for Canada to approve this treatment, which is already used in the U.S. The plan is playing whack-a-mole with the brain lesions whenever they pop up, and hopefully, soon, they'll be able to give me the drug that's supposed to prevent them in the first place.
I used to be claustrophobic; I had to get over that real quick with all the scans and MRIs and things.
I was asked to do a book launch for a resource for parents with metastatic cancer. The book is about a family with metastatic breast cancer, but it's really for anybody navigating that and the uncertainty in that, and it really does impact all families.
It's one of the first things I did when I got diagnosed. I was trying to find resources to support my kids. My son had just started kindergarten and was doing his first Terry Fox Run, and that's all he knew about cancer... My two-year-old still has no idea because he's two; he knows this has always been mommy going for her special medicine at the doctor.
I was trained as a child life specialist before I became a teacher, and I did a lesson with him. I sat him down, we drew a picture... I showed him where the tumors were like they were the bad guys. These are all the healthy cells in the body. And we need to have special medicine that's going to take these bad cells and turn them blue like the (healthy) ones. So we did this whole activity together, and he wanted to redraw it with only the healthy cells in my body. That's been sitting on my fridge every day.
As I've learned, you don't have a lot of job protection when you get diagnosed with cancer when on maternity leave. Because I had to take sick leave. I was under the impression through my union and through chatting with my principal that I would be able to return to my school if I could return in September. That had been my goal. Of course, there's some unpredictability obviously with having cancer, but I had been doing really, really well. I found out in June, the last day at school, basically the end of the day, that they had decided to surplus me, bump me from my school... When I do come back, they’ll place me somewhere, but being placed somewhere in a giant school board when you already live outside the region... I was very upset, and I was very hurt, given the circumstances.
I've been working for them for 20 years. I started as an EA in 2004; I even got my 20-year card in the mail recently, and it's like, (I've been a) loyal employee all these years, and it just felt like it didn't matter.
I stumbled upon the Rethink (Breast Cancer) website and, learned a little bit about them, and I saw some of the advocacy work that they were doing. It was about a year ago - a year ago yesterday, it was World Cancer Day, and they were hosting a letter-writing brunch in their office. We showed up and we were writing letters basically to talk about the need to revamp a lot of the system and access to newer drugs.
I didn't know anybody who had the type I had with Stage IV or who had young kids, and then I'm in this room, and I'm meeting all these women, and finally, I found women who understood what I was going through and you’re there when they were looking for key collaborators. I wanted to get involved and intervene in that.
On Rethink Breast Cancer:
I've been working with them. They do a lot of really great things, particularly for younger women, marginalized women, like young mothers, and different situations. They provide support, and they're also a really big supporter of the metastatic breast cancer community. They have a fund for metastatic breast cancer research, which is so underfunded and so important.
It's been really healing to be able to give back in the awful situation I find myself in and to feel like I'm doing something about it.
I hate to say it as a cancer patient, I'm just in shock of how the system is so rigid and almost broken in a sense where there's so much more they could be doing for cancer care... I remember crying in one doctor's office. I said, "I did all the right things. I showed up to everybody. I tried to get scans. They all told me I was low risk, too young. Here I am with Stage IV. How does this happen? And they're like, yeah, we know it's a failure of a broken system."
There's so many things that we can do to improve health care in Canada because we all pay a lot for it, and we all deserve equal health care access and accessible access for everybody. It shouldn't be that, just because I have a spouse who’s still able to work. Meanwhile, there's a single mom out there who finds herself in the same situation. She can't get funding for the drugs that she needs, and her hands are tied... It shouldn't be that way in Canada.
They announced the drop in age to 40 (for screening mamograms) 3 days after I found out I had metastatic breast cancer... So it was kicking me when I was already down because here I was. I had just turned 40, but still, I was told I was too young.
A lot of women don't realize, and I didn't even realize until I started working with Rethink Breast Cancer, that those regular mammograms that women go for every two years or one year... they are a screening mammogram, which is a general picture. Just look at things quickly, and there you go. See you in a couple of years. But a diagnostic mammogram looks at the particular area and takes several more images. It's more thorough, and so what happens is a lot of women I've spoken to were like, I just had a clear mammogram, and then when I felt a lump, I didn't think anything of it, and then suddenly I had Stage IV cancer.
There are types (of breast cancers) like what I have that are very aggressive, and they pop up really fast. But, the screening mammograms can miss them because it's a general quick look. It's not thorough. Any time you feel anything like a change, I don't care if you've just had a mammogram a month ago. Go to your doctor and see if you can get more diagnostic imaging done specific to that area.
On her prognosis:
Now that we have Gamma Knife, we don't really know. So they still say a blanket sort of 3-to-5 years. However, I feel like the only way I'm getting through this time is to imagine that newer drugs keep coming out and keep things getting longer and longer, and hopefully, we get to a point where perhaps I'll live long enough to be able to see a cure.
I've always been a big believer in healthcare and education... It's weird to find myself in this situation... I almost describe it as a comedy of errors, of how everything fell apart.
There's no flexibility in cancer care, even though they know that there's precision oncology and how effective that can be. It's really hard because you see people falling through the cracks—people who don't know. I'm not somebody who likes to push back, but I'm fortunate. The only way in this system is to advocate.
I really want people to know that it's important to stand up for yourself. It wasn't one particular doctor who didn't listen to me. It was a combination of people reinforcing that I was fine, getting gaslit a bit. I want people to know that if something feels off in your body and you're not getting the answers you need, you need to push back.
Nobody's going to fight for your life as much as you.
My life is blown apart. I can't go back to work and be a contributing member of society. I'm raising my kids while going through chemo, and I'm just being treated like, don't you know you're dying? It shouldn't be this way. It doesn't have to be this way, and the fact that I'm in this mess in the first place is frustrating enough. Add on that this attitude of, "Well, you’re Stage IV, not much we can do. We can't save your life," kind of attitude. It's not helpful.
Rethink Breast Cancer
We are your breast cancer movement.
Rethink Breast Cancer educates, empowers and advocates for system changes to improve the experience and outcomes of those with breast cancer, focusing on historically underserved groups: women diagnosed at a younger age, those with metastatic breast cancer and people systemically marginalized due to other factors within the social determinants of health.
We are here to connect, listen, empower, support, heal and rethink breast cancer together.
Laugh For A Cure
Laughter is the Best Medicine
Join us for a night of laughter & entertainment to raise money for metastatic breast cancer.
Cancer Vaccine Coalition
There’s no time to wait…
CVC supports the science by:
- Funding clinical research trials
- Creating collaboration
- Engaging stakeholders
- Promoting awareness
- INSISTING on better options for patients with breast cancer
With the goal of a safe, proven breast cancer vaccine in ]5-10 years
Daniel
Daniel is an extremely curious person, a wealth of random knowledge and facts. Extremely passionate about a vast array of interests ranging from health to history, science to athletics, everything culinary and the list goes on. Trust us, you would want to be on his team for Trivial Pursuit.
Daniel is also years into his battle with brain cancer. He experienced a seizure while on a Zoom call at work in late 2020 and quite literally, his life changed within minutes. After his operation he started to talk about his story but had always known it was more than just him. From then, More Than Our Story became a PROJECT that has evolved into the starting point it is today.
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