“I was born in Minneapolis, early, with a birth defect called spina bifida. That really didn’t affect much of my growing up, except for a few surgeries as I was growing, and one immediately following my birth to close the hole in my spine. Other than that, I was a typical kid, getting into all sorts of trouble with my big brother.
Then I went in for surgery when I was six, and the surgeon did a different surgery than he was supposed to, and that changed the course of my life in a big way. I am now in a wheelchair and don’t have use of anything from my waist down. I think being so young, I didn’t really have the knowledge or the ability to know how big of a difference that was.
After high school I moved to Arizona where I attended ASU and graduated with my degree in Sociology. When I was in college, my dad was diagnosed with colorectal cancer. He had lost both his parents and other family members to various types of cancer, so our family has a long history of cancer. He was just recovering from the first cancer when they found thyroid cancer. Overall, he had three or four surgeries, plus chemo and radiation.
During all of his treatment, my dad got a full genetic work-up. We found out he was a carrier for BRCA-1. So with my medical history, I immediately started the fight to get tested for the BRCA gene myself. Getting tested was a challenge; it just wasn’t covered [by insurance]. Eventually I was able to get it done, and on my first day of training at my first “big girl” job post-college, I was due to get my results. Every break I got that day, I’d call my mom checking to see if she got the results.”
“The thing about my mom, is usually she’s a pretty bad liar. When I got home from work I called her and she told me she’d been lying to me all day but didn’t want to tell me at work. I knew there was no way it wasn’t going to be positive. It hit me a lot harder than I thought it would. I remember feeling like I didn’t expect it to hit me; I felt like I was prepared. I thought it just meant regular screenings. Surgery was the last thing on my mind – I wasn’t even 30.
I got checked regularly and always laughed that my dad got his first mammogram before I did. When I got the results it came with a bunch of information. There was just a lot of negative statistics and information. I was already in a bad place to begin with, and it just seemed like I was heading to all the worst case scenarios. I had all the worst circumstances that statistically had the worst outcomes. My family had the discussion and their attitude was pretty much “take it all out!” And I know I can’t carry my own children, but I still didn’t want to go through invasive surgery to take out everything that makes me feel like a woman… all before age 30. Just no.
Then I was having severe bladder and urinary issues, which led to me needing a urostomy. And my urologist said the only way he’d go in and do that surgery was if I was also getting my hysterectomy. Basically nothing was going to get done unless it was a group effort. That one I felt like I was pushed into. But I just couldn’t handle the urinary issues anymore, so I really didn’t have a choice. And my mom’s words were always in my head, “they don’t find gynecological cancer until you’re already toast.”
My family felt like none of this was soon enough. I was hesitant, but they felt like they wanted everything out “yesterday.” I felt like the hysterectomy was really not my decision. It really impacted my mental health. I looked into saving eggs, but it was extremely expensive. And frankly, my dad has always said that considering all our medical issues he’s okay with the gene pool ending here.”
“About a year after my hysterectomy, I went for my regular mammogram. They gave me the spiel of having scheduled me for an ultrasound after, just as a precaution. It was just a normal mammogram so I went alone. After the mammogram they sent me to ultrasound, which was already a little weird. The ultrasound tech came in, didn’t say hi or acknowledge me, looked at the screen and said “Well, given how high risk she is we should probably biopsy it.” And he just walked out.
They told me they needed to schedule a biopsy. And I realized, “s**t, I need to tell my parents.” I don’t even really remember the call, but I managed to tell them.
A few weeks later I went to my biopsy. I was lucky to have the same nurse all the way through the process, so the biopsy itself wasn’t bad. I brought my earbuds and listened to music. Then I got my results: DCIS. Ductal Carcinoma.
Throughout all of this, I was somehow of the mindset that oh this was just pre-cancer. I hadn’t really processed it. Then the oncologist recommended a double mastectomy. I looked at her and said, “I realize the ridiculousness of this question, but what are the chances of getting this done before the year is out?” At that point I just wanted it done. She came back from chatting with the scheduler and told me they could do the surgery in two weeks, the end of November. The day before Thanksgiving.
The idea of healing and being out of commission scared me. The mastectomy meant beyond regular healing, my arms would be out of commission too, and that’s my whole functionality and mobility. It was awful. After surgery I couldn’t do a damn thing. They wanted it to be out-patient surgery. My mom and I advocated that there was no way that was possible. I’m immune-suppressed, I’m high risk… just no! I ended up staying at the hospital for the extra day. Not having any independence or mobility was the worst.
I ended up at a rehab facility for 10 weeks. I couldn’t go home because I couldn’t move on my own. I think I picked a fight with every physical therapist there. They tried to mess with my wheelchair… They tried to put me in front of a mirror before I was ready. There were just things I wasn’t ready to see yet.
I’ve talked to three different doctors, and there’s no chance of reconstructive surgery for me. I’m just too high risk. They were never going to entertain the idea of additional surgeries and foreign materials in my body. It was tough going from well-endowed to flat. I found a mastectomy store here in Minneapolis. I went and got myself a bra with little fake boobies. My grandmother saw it and told me, “I like those better than your real ones! Those fit you better than your real ones did!”
I do go flat most of the time. It’s been challenging to find clothing that fits me well, because I bought all my clothes with the idea of wearing them with my breasts. But my doctors are concerned about lymphedema and don’t want me wearing the padding too much just yet.
Throughout it all, humor is my go to coping mechanism. I think it also has its disadvantages. I use it to hide things and how I’m really feeling, too. But humor does help to get through a lot of it. The brutal honesty of the situation helps, having the medical clarity just laid out in front of me. Therapy helps. Everyone should see a therapist! I’ve been in therapy for a long time. My mom is a licensed therapist, and she recommended trauma therapy, so I finally gave in and it’s been really helpful. And chocolate, of course.
I think that I’m learning a lot about myself through all of this. Like how to find myself and my place in this crazy family of mine. I’ve learned boundaries. I’ve learned to just sort of be who I am and say “screw it” to the rest.”