How Kathleen Nowoczin survived breast cancer.
Health, it's a complex subject because it is so different for everybody. May 28th is when International Day of Action for Women's Health is celebrated, and at Modern Match Lingerie we are dedicating the entire month to Women's health by featuring a blog a week on different health topics.
We reached out to Kathleen earlier this year and asked her if she would be willing to write about how she survived breast cancer, and her experience through it. Her story is one of resilience, determination and strength. Kathleen is 49-years-old and lives in Prince George B.C., Canada.
MM: Hey Kathleen, thanks so much for agreeing to share your story with us and our community of women. Before you were diagnosed with breast cancer, what did breast cancer mean to you?
Kathleen (K): My mom had had BC (Breast Cancer) a few years beforehand, so I was very aware of the possibility and was being proactive. What I was not prepared for was going through this with two small children at home. I wasn’t prepared for how the diagnosis was not only going to affect my body but my mind, and the mind is so much more complex.
I was in the process of doing the genetic testing when I was diagnosed, and just a few days before my surgery I was notified that the genetic counsellors wanted to meet with me. Normally they don’t give any results over the phone, for obvious reasons, but once I told them that I had been diagnosed and was prepping for surgery they told me that my results were in fact, positive, and I carried the breast cancer gene. Although having that information gives you power, it also added a whole other layer. This wasn’t just about me anymore, it was about my children and grandchildren.
MM: That realization must have been a tough one to come to, knowing that this wasn't just about you anymore but understanding it would also impact those around you. When did you find out you were diagnosed and what was that like for you?
K: Terrifying to say the least, although two of my surgeons commented on how logical and composed I was–they thought that was strange. I tried to remain as stoic as possible and focus on the facts because I was afraid that if I gave in to the emotions I would end up down a rabbit hole and not be able to get back out.
The fear was intense, not so much fear for myself or my mortality, it was fear for my husband and children. Instantly I worried about how I could take care of them if I was sick or gone. How would they remember me, had I done enough to make them good people? A million questions racing in my head all at once. Although I was living in my head most of the time, I was very proactive in ensuring that everything was in order, I wanted to make sure that it had as little impact on my family as possible.
MM: I think your reaction just goes to show how selfless we are as women, your immediate concern for your family's wellbeing is honorable. Were you able to process the fact that you were diagnosed with cancer right away? What was going through your mind after the diagnosis?
K: Yes, I instantly went into a fact gathering mode in order to make the best decisions possible. Through everything my children were my main concern, and I was willing to do whatever I needed to do so that I may one day see them get married, and hold my grandchildren.
In fact I was given a number of options by the surgeon and I made the choice to have a radical double mastectomy as it gave me the best chance. Although I had already voiced that was my decision, a few days before my surgery I contacted his office and he actually spoke to me on the phone.
I expressed to him that I was second-guessing my choices and that maybe I should just have the lump removed and maybe I was overreacting and having a surgery that wasn’t necessary, many people would think that the surgeon was being a little crass, however, I often go over our conversation in my head and I know I made the right decision. He said to me that if I was his wife or daughter he would insist that I had a double mastectomy and not just a lumpectomy.
He put it to me this way, he said, would you like to see your children graduate high school? Of course my answer was yes. He said then you need to have a double mastectomy because if you don’t it will come back and it will more than likely kill you.
I fully believe that that conversation saved my life. I needed to let go of trying to save my breasts and worry about saving my life. That doesn’t mean it was an easy decision, but it was the right one for me. I thought back to when my mom chose to have a lumpectomy and radiation and I was annoyed at her and said to her repeatedly, "they're boobs you don’t need them anymore just let them go get rid of them", and she chose not to.
But once I was in the situation I realized you can’t tell anybody else what to do. It’s easy to see what you would do if you were in that situation but the reality is none of us know until we’re in it, facing with the hard questions. My mothers did come back, and she ended up having a double mastectomy the second time around.
MM: Wow, I'd never looked at my breasts like that before... but those feelings, woman to woman, I understand. I am glad you made the right decision for yourself. How did the diagnosis impact you? How did it impact your loved ones?
K: During the process I was all business and was intent on showing how tough I was but the reality is I do struggle, even now, with my body image and feeling feminine. It had a huge effect on my family, especially my daughter who was just six years old at the time. She and I used to read together every night before bed, that was our thing. When I got sick I was no longer able to do this anymore, mostly because I was in isolation in the hospital for six weeks and the kids were not able to visit.
Once I was well enough to start reading again she would always ask me to read, and I would, because that’s what made her feel safe and comfortable at the time. Long story short, she ended up regressing significantly and refused to read at all, she also fell behind in school. It was very frustrating because at the time my kids attended public school and they fell between the cracks.
They told me that my daughter was not getting low enough grades to receive any help, but also couldn’t keep up with the class, so they would just wait until she had low enough grades to receive services. That didn’t work for us, so I ended up pulling my kids out of public school and putting them in private school; she received one on one tutoring daily, then biweekly until she was totally caught up, and ended up being a straight A-student for the rest of her school career.
MM: I can only imagine how the impacts were felt within the family, however, I am glad to hear that although there was a bit of a negative with your daughter, she came out shining. How long were you in treatment for?
K: My story is a bit different because the realty is I didn’t NEED treatment because I made the choice to have all my breast tissue removed. When I was first diagnosed I was given a couple of options, the first one would be to have the lump removed followed up by radiation and chemo, or I could have a radical double mastectomy and if my lymph nodes were clear I wouldn’t require treatment, but that could be altered slightly after all the tissue goes to pathology.
I chose to have a double mastectomy and thankfully my lymph nodes were clear so treatment was avoided. That all seemed great until about a week after surgery when I’d been home for about 48 hours and the pain I was feeling was off the charts and I had what looked like cigarette burn holes under my armpit and quickly spreading. We headed back to the hospital where I was seen in emergency.
Once the doctor assessed me he moved me into an isolated area and called both my surgeons in. I knew this wasn’t good because it was a Saturday night and all these doctors were coming in to see me. Long story short I was diagnosed with flesh eating bacteria, as well as MRSA and VRE, all of which were contracted in the hospital–I knew this because I was screened for them prior to surgery and was negative. At this point I was put in to an isolation room where I spent the next six weeks on heavy narcotic medication for the pain, and over 160 bags of antibiotics pumping through my system, I had two more surgeries that required them taking healthy tissue off my legs in order to close the now gaping holes in my chest skin.
Because we have no family here, my kids ended up going to Kamloops, B.C., CA, to stay with my parents so that my husband could continue to work. On his days off he would spend all of his time at the hospital with me. This whole experience is pretty insane and to say that my scars were awful is an understatement, I felt like I looked awful, and was beyond self-conscious and broken.
After all of this I continued to heal over the next two years, then in early 2010 I was in an awful motor vehicle accident where the impact was so hard that the pressure of my seatbelt caused my implants to explode, therefore requiring me to have four more surgeries and start over with tissue expanders and such. Because of the accident it felt like I was right back at square one and in total had nine surgeries to just fix my chest.
MM: That must have been extremely difficult, feeling like you're back at square one. With that being said were there ever times you felt like giving up?
K: I think they were moments where I felt defeated but I don’t think I ever truly felt like giving up because of my children, the fear of leaving them without a mother was much stronger than my own pain.
MM: Children are such a beautiful thing, I am glad in them you were able to find your strength to keep fighting. How did it feel to be told you were rid of the cancer?
K: It’s a pretty amazing feeling once you’re better, but I felt like by the time I had endured everything I couldn’t take satisfaction in knowing it was over because I hadn’t processed all of the trauma that I had experienced.
MM: For sure, that makes a lot of sense, lots of ties left undone. Now that you've gone through this experience what does breast cancer mean to you?
K: It is something that happened to me and it was awful but it made me who I am today. If I’m being completely honest, it makes me angry for all the things that stole from me. Just answering this question makes me teary-eyed 13 years later.
It took my confidence, my body, my femininity, my sexuality and ability to feel like a whole woman. I know deep down that my husband loves me and is still attracted to me, but I find it very hard to love myself. Yes they are just breasts, but the reality is they signify so much more. For at least a year after my initial surgery I showered in the dark and got dressed in the dark so that I didn’t have to look at myself.
Now I wear my scars with pride knowing that I kicked ass, that doesn’t mean my confidence doesn’t shutter sometimes because it definitely does, but the most part I’m just proud of how I endured all the crap thrown my way. Now I just silently worry about whether or not this will seep into my children’s bodies, and pray that they never have to experience what I did.
MM: Thank you for being so vulnerable with us. What’s a piece of advice you would give someone battling breast cancer right now?
K: Let people help you, ask for help, take the help, and let everybody around you know what’s going on. I let my pride get in the way and was very private, which led to fighting most of my battles alone.
Many people around us didn’t even know what was going on, and looking back, I would change that. Just before I had my surgery we sold our two vehicles to go down to one because we didn’t know how long I’d be able to work, and I had just started a new job so I didn’t qualify for unemployment insurance.
I remember about a week after I was released from the hospital I attended a sports day at my children’s school, and one of the other mothers that knew nothing about my story said to another mother “oh must be nice, she got a brand new vehicle and a boob job, I guess they’re not really broke.” Luckily the person she was speaking to happened to be a friend of mine and quickly corrected her, but I still knew it was being said.
MM: What advice would you give to young women, or women of any age who haven’t experienced breast cancer themselves?
K: Know your body, be your own advocate and you’re not too young, that’s a fallacy. If you see a doctor and you don’t feel like they’re listening to you then find another doctor. I believe that we all know our own bodies best, so we know when somethings not right. If you do get diagnosed, take help. Reach out to people who have been there before because most of us are more than willing to hold your hand while you go through this.
MM: Once again Kathleen, I have to thank you for participating in this interview series, we really appreciate you getting vulnerable with us, and with our amazing community of women. Is there anything else you’d like to add?
K: I think I’ve covered everything, but I want to think Modern Match for listening to my story and including breast cancer survivors.
The Canadian Cancer Society recommends that women 40-49 years of age talk to their doctors about their risk for breast cancer, and the benefits of mammogram screening. Women between the ages of 50-74 are recommended to have a mammogram every two years.