“We need more awareness of, and money towards research for metastatic disease. People are losing their lives!” - Leslie Gartenberg
MK: Who is Leslie Gartenberg?
LG: I’m a wife, mother of three boys, a Nutrition Educator and Certified Personal Coach, champion for the environment, and for those who need a voice.
MK: What was your life like before you were diagnosed with breast cancer?
LG: Life before cancer was incredibly busy, but happy.
MK: What do you wish you'd know before being diagnosed with breast cancer?
LG: I wish I’d known what Pinktober really is. I thought I was helping when I purchased pink items.
MK: How has this experience changed your life?
LG: The good: I know I’m stronger than I believed I was before. I’m less guarded. I am who I am- like me or don’t. I’m more vocal about causes in which I have strong opinions, such as the need for access to quality healthcare for all. Cost should never be a factor that determines care!
The bad: I have less patience because I always feel like I’m running out of time. Because of the chemotherapy, I have chemo brain and I struggle with reading, which was always something I enjoyed before. I’m also working on body image issues. I’m still struggling with fatigue so I do far less than I used to. I worry I’m not being as good a parent as I was before cancer. My youngest child isn’t getting the same mom his brothers got while in elementary school.
MK: What are the biggest mis-perceptions about breast cancer and how would you change them?
LG: Everyone thought I’d look so sick, gaunt and fraile while in chemo. They were surprised that other than my hair being gone, I looked normal. I didn’t feel normal, but I didn’t look pre-dead as they apparently expected of me. They thought because they saw me out for an hour looking normal I must be feeling good and “doing well”. That hour out tired me out so much that I slept the rest of the day-and most of the next day. I didn’t go out much, and only in the brief few days I was feeling well enough between chemo cycles.
People think you get cured after treatment. This “fight” and “battle” language is problematic. Are my friends who were diagnosed at stage IV, (metastatic disease) not fighters because their disease will eventually kill them? If I’m one of the 30% of early stage cancer patients who goes on to develop metastisis, did I not fight hard enough? And while we’re on that, no, I did not cause my cancer by taking birth control pills, or eating sugar, or soy, or microwaving my food. I ate organic food wherever possible, I was at a healthy weight, I exercised, and I nursed my children. I still got different two kinds of primary breast cancer (and one, the 9 cm one, wasn’t picked up by my mammogram at all)! It can happen to anyone.
MK: How do you feel about “breast cancer awareness”?
LG: If I see one more viral email post or a heart as someone’s Facebook status to “raise awareness” for BC I think I’ll scream. (And everyone tags me on that.) I am quite aware, thank you! I have no breasts- I’m plenty aware! I think we have enough *general* overall awareness.
In terms of Breast Cancer awareness month.... instead of buying pink yogurt, donate to a breast cancer charity or better yet, a local charity that helps women (and men) who are dealing with breast cancer. Go volunteer to drive someone to chemo, make a meal for their family, drive their kids to school or after school activities, have their kids over for a play date, visit with someone who is struggling so they don’t feel isolated and alone. All of those things would be so much better than “pinkwashing” breast cancer. We need more awareness of the needs of patients who have early (pre-menopausal) diagnosis of breast cancer, as our needs are different than post menopausal patients. (Note; I’m not saying better/worse or more/less, just different.) Every time I’d subscribe to a blog or newsletter the welcome letter and attached photo was of two grandmotherly looking women. That’s not me! I had a six year old at home and needed help with playdates!
MK: What word do you wish you could take out of the breast cancer vocabulary?
LG: The word “brave”. I’m not brave. I’m petrified. I don’t want to die. I did what I needed to do to not die-yet.
MK: Why is education, research and access to clinical trials so important?
LG: Thirty percent of early stage breast cancer patients will go on to develop metastatic breast cancer (MBC). We need a cure for MBC which is the kind that kills us! We need better access to clinical trials because when you have nothing else to lose-we are owed access to the potentially life saving-or life extending potential treatments.
MK: What would you tell a newly diagnosed young woman?
LG: Reach out to other survivors. It’s the sisterhood you didn’t ever want to be a part of-but there’s so much wisdom and support here. The online community is especially supportive. Check out #BCSM on Twitter and Beyond The Pink Moon on Facebook.
MK: What is your biggest fear?
LG: I’m afraid I’ll be in the 30%, and I’ll become metastatic, and won’t get to be there to help my kids grow up. I don’t want to die. I’m not done here.
MK: What one word defines you?