Today we are continuing with one of our features, personal interviews! You can read our past interviews here. Today Cactus Cancer Society talks with cancer survivor, Jenn. She is a two-time breast cancer survivor, talks to us about her book, parenting during a cancer diagnosis, and so much more!
Cactus Cancer Society: When were you diagnosed and what is your diagnosis?
Jennifer: I found a lump in my breast in 2007 when I was 38. I assumed it was a cyst, it felt rubbery – not rock hard. I figured it would go away after I got my period – but it didn’t. I had gone for a mammogram 18 months prior (as a baseline and it was normal) so I called the imaging center at my husband’s urging (he didn’t like the way it felt at all) and they took me right away. After the mammo they sent me down for an ultrasound…and I began freaking out. No one would tell me anything – but they kept patting my shoulder. I knew it wasn’t going to be good news. A core needle biopsy came back inconclusive but two weeks later the surgical biopsy revealed invasive ductal breast cancer, stage IIA.
CCS: How did you feel when you were first diagnosed?
J: I was so deeply in denial. I really couldn’t wrap my head around it. I felt like I was telling a lie each time I told someone about my diagnosis. I thought breast cancer only ran in families or only happened to women over 40. I was clearly mistaken and I had a lot to learn. My surgeon told me that because the mass was contained and relatively small I would be a candidate for a lumpectomy. Fine by me – get it out, get it over with was my mindset. Once I saw an oncologist though he kept using the words aggressive and fast growing. Which made me nervous. I just wanted to get through treatment and get on with my life. I had no idea that my life would never be the same.
CCS: Who/what/where did you turn to?
J: I had terrific support from my family and friends but none of them had any experience with breast cancer. I went online and the pages I was directed to were terrifying and filled with statistics I was not ready to know yet. I struggled to find books or support groups geared toward young women. Everything I found was aimed at older women and the advice was to look at this as a gift, slow down, retire, and enjoy the grandkids. What the WHAT??? I had little boys at the time (age 9 and 11). This wasn’t a gift, gifts make people happy, cancer makes people cry. And retire? I was just getting my career back on track after taking a few years off while my boys were babies. Nothing made sense to me. I wanted to know what treatment would really be like, because in my head getting chemo meant that once the drip started I would immediately begin throwing up and all my hair would fall out at once in the doctors office, (clearly I’ve watched too much Lifetime television).
CCS: What (if any) additional outlets could you have used/turned to that you do not feel you had at the time?
J: I eventually found support at my local Cancer Support Community but typically I was the youngest of the bunch. There were only about three of us under 40 and in active treatment. There are so many wonderful resources that exist now that didn’t in 2007. Facebook groups and online support groups like Cure Diva and the LBBC both of whom also have a strong Facebook following.
CCS: How did you choose to share your diagnosis with your children?
J: Once we knew the stage and planned treatment we told them in very simple, honest terms that were age appropriate. I was diagnosed two days before my youngest son’s birthday so we waited until after his birthday to tell them both. They knew something was going on because I’d been home from work for over a week and we wanted to make sure they heard it directly from us rather than over hearing a conversation or voicemail message that would frighten them. We sat them down after dinner and explained that a few weeks prior mommy found something hard in her chest and when you feel something in your body that doesn’t feel right you go to the doctor to get it checked out. I told them that I went to the doctor and he ran tests and did a small operation and found out that I have breast cancer. I explained I was going to take medicine that might make me sick and tired and my hair might fall out but it would grow back in again. Very, very hard conversation to have, I felt like I stole their childhood away from them. They were amazing though, lots of hugs and kisses and support – even still to this day as young men!
CCS: What was your biggest parenting challenge during cancer treatment and into survivorship?
J: I lost my job during treatment so I used the opportunity to volunteer at their schools and participate as team mom for the sports they played. Yea, I was the bald mom at football practice and in art class but I used it as a teaching moment for all the kids. Some asked to see my head without my hat or scarf and I happily obliged. I wanted my kids to know that no matter what I’d still be their mom and I’d always be there for them. The toughest part though was when another child told one of mine that I was probably going to die. I had to do a lot of damage control, I certainly couldn’t predict the future but I couldn’t have my kids living in fear either. I always tell them (still to this day) I’m fine right now.
CCS: Any words of wisdom to other young adult cancer survivor moms (and dads) out there?
J: Break everything down into two categories; what you can control and what you cannot control. A cancer diagnosis makes you feel very out of control. You cannot control the treatment or the surgeries or how you will feel but there will still be things in your life that you can control so focus on that. It helps to feel empowered. Also, take it one day at a time. Rest when you need to, listen to your body, and take care of yourself first and foremost. You’re allowed to be selfish, you’ve earned it.
CCS: What kinds of things did you do to distract yourself when you were going through treatments (either at home or at the hospital… Or both)?
J: I began writing the book I needed to read. As I said earlier I couldn’t find a book that I could relate to and I had also lost my job while I was in treatment. I began keeping notes and eventually thought if I recorded, honestly, what it was like for me to go through treatments as a young mom then maybe I could make a pamphlet to help others. Once I hit over 100 pages I realized that my pamphlet was going to be a book. Does This Outfit Make Me Look Bald? was published in 2012, at the same time as my 5th cancerversary. I also listened to music, watched movies and napped – a lot!
CCS: How did you decide to start blogging about your experiences?
J: Interestingly enough, when I was promoting my book I had decided to have a prophylactic bilateral mastectomy. Since my initial diagnosis I had several false alarms (benign growths) and I also had a complication of severe radiation deformity, which was physically and emotionally painful, it had become too much to bear. During the MRI prior to the surgery they found a small cancerous lesion at my lumpectomy sight. It was not a recurrence but a brand new cancer with different properties than the first one, this can happen 20% of the time – I had no idea. I knew the drill at this point though. I booked a haircut and a bilateral mastectomy on the same day. Once I was home and on disability leave I began blogging to help me process what I had been through and to keep my friends updated, it was incredibly cathartic. Since I had become such an outspoken advocate for empowering young women with breast cancer I had made multiple media contacts that had promoted my book I ended up with several sites running my blogs too.
CCS: Could you describe how sharing your story has affected your journey with Cancer?
J: I’ve helped women that I’ve never met and that means the world to me. I have no idea why or how I got cancer once – never mind twice. I always felt that if I could make the road a bit smoother for someone else then all the stuff I went though makes sense. I needed to give back to others and help them through my own experience. I have a Facebook fan page for the book where I post current articles about research, blogs (my own and others that I like), and also a lot of humor – because I know that during my darkest days I still wanted to laugh. I needed to find some humor. Being sick is so damn scary and so serious that on the days I laughed I felt like I was taking a vacation from cancer. I’m also a National Cancer Survivor’s Day (NCSD) recommended speaker; which is pretty cool. I’m asked to give about 4 or 5 speeches a year – and I love knowing that those talks reach even more people than my book and blogs do.
CCS: Where are you now in your journey with Cancer?
J: I’m fine until a doctor tells me otherwise. My blood work gets checked every six months and I see my surgeons once a year. I still deal with mild PTSD but I have my coping tools so I know how to manage that. I’m both a 9 year and 3 year survivor.
CCS: What do you like to do in your spare time?
J: I live near the beach so if the weather is nice – my toes are in the sand! I like to run a few times a week while listening to very loud music. I continue to write my blogs and I’m also working on a fictional novel. I also love going out to dinner with my husband and kids.
CCS: What “words of wisdom” and/or advice would you give any young adult facing Cancer or another life-threatening illness?
J: You’ll be amazed by your strength and you’ll have far more good days than bad so relish those. Breathe deep, relax, laugh and love in equal measure and cherish yourself first and foremost. Listen to your doctors and partner with them, be your own best advocate. And if you feel as if they are dismissive…fire them! You get to be the boss of cancer.
Thank you for sharing your story with us, Jenn! Look forward to a few more pieces from Jenn soon!
Are you a young adult cancer survivor, caregiver, or do you have a long term illness? Interested in being interviewed by Lacuna Loft? Let us know! We’d love to hear from you!