"I want to share my story in hopes that it might encourage women to go see their doctors or to request an early pap. It’s easy to hold difficult experiences close, put them behind you and try to move on, but I’ve found sharing my story to be a cathartic experience. And I just hope that it can make a difference for another woman out there."
In January of 2020, Rachel Mielke received a cervical cancer diagnosis, which set her on an onerous personal journey toward recovery during a year of global suffering. During this trying year she was able to find respite in simple things like deep breathing, journaling, and juicing. Family, support networks, and second opinions were also instrumental in guiding her through some incredibly difficult decisions.
“Things in life happen for you. They don’t happen to you.” Rachel often circles back to this quote when talking about her diagnosis, and it’s easy to see why she values this perspective of things “happening for you.” After all, this journey brought her closer to her advocacy work, helped her re-evaluate her work-life balance, prioritize her health, and make the big decision to move her family to Victoria. This experience gave her a sense of urgency and clarity about the changes she wanted to make in her life, and she executed those changes in a way that proves that times of great difficulty can also be times of great opportunity.
What was your initial reaction to the news? Is there anything you’d want to impart to someone who is going through that process of receiving a diagnosis?
So there are a couple steps before you get to a cervical cancer diagnosis. First you have an abnormal pap, and then you see a gynecologist and have a biopsy done. So, obviously, there were indications that cancer was a possibility. Still, it came as quite a shock because throughout those steps, I was constantly being reassured because it was my first abnormal pap. After I got the news about the abnormal pap, I talked to so many women who’d gone through the same thing, and I’d learned that an abnormal pap can mean many different things; it doesn’t necessarily mean cancer. I was also reassured by the fact that it took almost 8 months for me to get a biopsy. I thought, “Well, gosh, they wouldn’t let this much time pass if it was something really serious.” In hindsight, I think I would’ve been a bit pushier and tried to get things moved along quicker.
When I did get the cancer diagnosis last January, one thing I wish I would’ve done is taken someone with me to the doctor because receiving that news alone was really difficult. I wish I hadn’t driven away from that doctor’s office by myself. I was in such a challenging head space. So, for every subsequent appointment, I took a notebook and my husband because I found the appointments so emotionally intense. It was hard for me to rationally receive information. I had to write everything down and then discuss the appointment afterwards with my husband when I was able to better process the information.
What kind of treatment did you receive? What stage of cancer was it?
Fortunately it was caught very early, but when I was first diagnosed there was a period of time (several weeks) where we had no idea how bad it was. I had started going to the doctor because I’d been feeling unwell for almost a year. So when this diagnosis came up, I immediately went to the worst case scenario. Those first few weeks were really challenging. When you have cervical cancer, step one is an in-person exam where they see if they can feel or see anything. The doctor didn’t see or feel anything so she thought it was early, but the diagnosis is not definitive until you have a hysterectomy. I had to wait about six weeks in between diagnosis and surgery. Six weeks without a definitive stage diagnosis. That was really hard.
The next step is an examination by your oncologist. The oncologist does a procedure called a LEEP where they take about half of your cervix. It’s a quick little procedure that you’re fully awake for, and my doctor hoped that since it was at an early stage, they’d remove the cancer with the LEEP. Unfortunately, after the procedure, there were some differing opinions among the pathologists in Regina about whether they’d gotten it all and they decided to send the LEEP results for a second opinion. When the second opinion came back, they found they hadn’t gotten all of the cancer. That was obviously more scary news because there’s just so much you don’t know. The next step was a hysterectomy. My doctors gave me an option: “Do you want to keep your ovaries, or do you want us to take them?” My initial reaction was “take it all.” But, honestly I had great advice from a family member who is a physician, and one of my friends (a gynecological pathologist) who was able to send me a lot of information and say, “New information has come out, Rachel. There is a very small chance that this has invaded your ovaries at this stage, and there are more risks of taking your ovaries.” So that was a big decision to take or leave my ovaries. My surgeon seemed more on the side of taking it all out. And of course you want to take your surgeon’s guidance, but because we had that second opinion, I had the time to make the decision to keep my ovaries. That’s a big deal, especially for bone and heart health. So again, I feel fortunate to have had those conversations and perspectives. The pathologists disagreeing on my report and sending it for a second opinion meant my surgery was delayed a month. That month gave us the time and information I needed to make an educated decision about whether or not to keep my ovaries. Throughout my experience I learned you really have to challenge the process and ask questions and get perspectives from other medical professionals. Don't take your diagnosis, prognosis or treatment at face value without asking a lot of questions and seeking a second opinion. Every patient has the right to ask for a second opinion whether your doctors think you need one or not.
"If there is one message I’d really like to stress, it’s that every woman needs a pap and young men and women should be getting the HPV vaccine."
Pap tests are awkward at best. For some, they’re quite scary. Is there anything you’ve learned that has helped make them less daunting?
My experience with paps is that I’ve always had them regularly. My perspective is, “If I’d been born a hundred years ago this technology wouldn’t be available.” We’re so lucky to have these tests! So as inconvenient or uncomfortable as a pap may be, it’s just such a small price to pay compared to what you go through with cancer. And that’s what a pap is for, it’s to detect it early, and if you can catch it early you can treat it so easily and prevent invasive, devastating other treatments that you’ll need if a cancer does progress.
One thing I found out was in Saskatchewan there is only a 52% uptake in the pap program, which means a lot of women are opting out of getting a pap, which is very worrisome. [Check your provincial guidelines for screening procedures.] The stories of women who have been diagnosed with advanced-stage cervical cancer are just so heartbreaking and unnecessary. If there is one message I’d really like to stress, it’s that every woman needs a pap and young men and women should be getting the HPV vaccine.
Is there anything that you discovered along the way that helped you get through these procedures? Maybe things that helped your mindset, or approach, or forms of self-care before and after the procedure that you found helpful?
I’d been working with a business coach for several years before I was diagnosed and so having that resource was certainly helpful. Had I not had him, I would’ve reached out to a counsellor or psychologist. The day I received the diagnosis, Keith, my coach, actually encouraged me to go through an exercise of journaling my thoughts and feelings out onto the paper and facing a worst-case scenario. He thought it was important that I go to that point mentally and emotionally in the first days of my diagnosis so that regardless of the outcome—I was mentally prepared. That was an incredibly challenging exercise. I actually burnt that journal after the cancer was gone as a celebration of that chapter coming to a close.
I’d also say that journaling every day was one of the most powerful tools I came across. It took the worst thoughts and anxiety I had over my diagnosis and the impending surgeries and gave me a safe place to put those thoughts. Obviously the support of my family and friends and professionals and getting as much information as I could was vital. But, for the emotional side, journaling and the Wim Hof breathing technique was very helpful when the anxiety was so overwhelming. There were times when I was in such an intense emotional state and my husband would suggest, “Let’s do Wim Hof breathing.” And that would bring me out of that state quickly. It was also important to connect with as many people as possible who had positive stories related to cancer. Just knowing that these women were out there was really helpful in those first few weeks.
After a diagnosis, you just experience this overwhelming lack of control. For me, as a CEO, I’ve spent my life feeling in control of my destiny. Experiencing this utter loss of control was especially challenging. One thing that I could focus on doing was juicing (laughs). Juicing helped my mental state—just the process of getting those fresh organic vegetables and chopping them and juicing them, and then chugging that terrible stuff back—it helped get me through the months after my diagnosis. And I do think it helped my body get stronger.
"The diagnosis forced me to step back and ask myself difficult questions and make changes in my life, and for that I’m in a better place."
What would you say to a person who is nervous about getting tested?
The provincial guidelines for Saskatchewan are if you’ve had consecutive normal pap tests you don’t require a test for another 3 years, and those are the guidelines that I was following. You can still develop cancer in that three-year window. If you don’t feel well, don’t just say, “Oh the guidelines say to get tested every three years. I’ll wait until then.” No, go sooner! Don’t wait. Nobody is going to advocate for you. You have to get tested and ask questions, challenge what they tell you, and get a second opinion. If you feel like something is off, go sooner. You don’t need to wait three years if you aren’t feeling well. Especially now, with the pandemic it’s so easy to say: “I don’t want to go because of Covid,” and put it off and I’d just like to encourage women not to do that.
For many women cervical cancer treatment affects certain biological processes that are synonymous with femininity. Some of the surgery and radiation therapy can trigger menopause, or eliminate your chances of getting pregnant. In what ways do you think femininity and womanhood transcend these more traditional, biological associations?
I want to make this very clear that these are my own personal feelings about my journey because views on masculinity and femininity are so individual. But if there is anything that this journey taught me it’s that there is so much more to masculinity and femininity than the biological. I believe that men and women both possess a feminine side and a masculine side. I had to have a hysterectomy, but I’d had children already so I didn’t find that the operation had a big impact on how I felt about myself. When you come to this potentially life-threatening diagnosis—and this realization that there are these parts that you might have to sacrifice in order to move forward, for me, the parts became less important. They became something I had to say goodbye to, but it didn't change how I felt about my femininity. But, if this had happened earlier in my life, and I’d lost the chance to have children, I think that would be challenging.
"The journey of life is to feel this wide range of emotions—we allow ourselves to feel them, and we can come to each other for support."
I know women’s advocacy is a big part of your life—within and outside of H&B. How has your diagnosis affected your work in that area?
I’m the co-chair of Women Leading Philanthropy, an organization that funds transformative healthcare initiatives led by female physicians. This past year one of the funded projects focussed on physiologic mechanisms underlying ovarian follicular waves during the menstrual cycle. One side of it was menopause, but the other side was helping women who have had a cervical cancer diagnosis begin to harvest their eggs almost immediately as opposed to delaying their cancer treatments while waiting for the next egg release cycle.
So my passion for this work—I mean, I was passionate before—but now I’m so passionate because when a woman who is of childbearing age has a cervical cancer diagnosis, quite often that could mean she won’t be able to have kids. It’s different for everyone but that is a risk potentially. Of course as women, our femininity transcends our ability to bear children but what is so important to me is that women have the ability to have choices.
You mentioned that everyone has a masculine and feminine side. Did you find yourself more in touch with either side throughout this journey?
Yes. Someone once told me that things in life happen for you, they don’t happen to you; that can sometimes be a difficult perspective to accept when you’re going through something like cancer. But, after looking back, I see that what I went through gave me the opportunity to be vulnerable and, honestly, I had to be vulnerable to survive it emotionally because it felt so crushing at times. I had to be willing to talk about it and open up to people. I needed to cry a lot. Those are all things I don’t normally find myself doing, but they were powerful healing tools and human connection requirements. When I look at who I am today versus who I was a year ago, I feel like I’m much more in touch with my feminine side and really thankful to be on this journey to embrace both sides fully and without judgement.
If I need to cry, I just do that and I’m not afraid to show that side of myself to my children. So when they see Mommy cry they know it’s normal and it's ok. We’ve normalized that behaviour. The journey of life is to feel this wide range of emotions—we allow ourselves to feel them, and we can come to each other for support.
How does a diagnosis like this affect your life and work? Your family?
When you look at an experience like this as something “that happens for you” then you’re kind of given a blank slate. I wanted to take the time after my diagnosis to step back and re-evaluate every aspect of my life—my work, where we lived, and time spent with my children, husband and extended family.
After re-evaluating, I decided to embark on a series of changes. We made the decision to move to Victoria to be closer to several members of our family. I challenged myself to step back from my work a little bit and find more time to spend with my husband and my children. My health has become my number one priority and that change has been a lot of fun. I have all of these passions that I never knew I had. I found out that I love mountain biking! I can’t wait to go out on the weekend and bike around a mountain, mud and all. It’s fun, challenging and empowering! It has helped me gain back confidence that I lost going through this journey. Before, I might have thought, “Oh it's a bit frivolous to take three hours to go mountain biking,” but now I realize that time makes me a better mom, wife, and CEO. Prioritizing my health has set a good example for everyone. It’s important for my mental and physical health and it’s been super empowering to give myself permission to make that a priority in my life. There’s been a remarkable change in how I feel. I haven’t had this much energy since having kids (chuckling).
It’s often said that we learn the most in times of great struggle. Do you feel like this journey has given you some wisdom? Or a valuable new perspective on life?
Without a doubt. As challenging as going through this was—and it pretty much went from one crisis to another with cancer in January, and then surgery in February, and then Covid in March—I sort of thought, “Oh my gosh, how much more can I handle?” But again all of those things were open doors for our family to re-evaluate where and how we were living. The most important thing throughout this has been the chance to refocus. I do think that there was a tremendous amount of learning that came out of this whole experience. I feel grateful for where I am today versus where I was 12 months ago. The diagnosis forced me to step back and ask myself difficult questions and make changes in my life, and for that I’m in a better place.
I’m also extremely thankful that my cancer was found early, and that I didn’t require any cancer treatment after my hysterectomy. So many women are not so lucky; their journeys will look very different from mine. But knowing that early detection is so critical to a positive outcome, I want to share my story in hopes that it might encourage women to go see their doctors or to request an early pap. It’s easy to hold difficult experiences close, put them behind you and try to move on, but I’ve found sharing my story to be a cathartic experience. And I just hope that it can make a difference for another woman out there.
If you’re looking for access to healthcare support, including pap testing, please follow the links below for cervical cancer screening information by province. If you’d like to help improve visibility, awareness, and availability surrounding pap testing and the HPV vaccine, consider donating to organizations like Planned Parenthood or The Federation of Medical Women in Canada.