Clinical Trials & Me...
When I was close to finishing my active treatment (8 rounds of chemo and 33 rounds of radiation) my oncologist recommended I take part in a clinical trial.
I was so not sure of what to do. I mean, I had just finished the marathon of breast cancer stuff and with 2 kids, losing my job, and just you know life and wanting to get back to some semblance of normalcy I questioned my sanity for considering a trial.
The drug is called Imbrance and the trial is called Pallas. I was given the paperwork to think about and then went about trying to readjust to you know life.
But the thought of the trial was nagging me - I read the papers multiple times and could recount the 5-7 pages of potential side effects of the drug. I knew this drug was used to treat metastatic breast cancer but I was not metastatic - the point of the study is to see if this drug should be part of standard of care for early stagers as there is a plan for helping breast cancer patients stay progression free and recurrence free for as long as possible.
I was leaning towards signing up for the trial of which I would have a 50/50 chance of getting the pill or not (there is no placebo). My husband and mom were like, "Are you nuts?" and you know, I am. I signed up and got the pills and now I’m 12+ months in to a 24 month study and I have been so damn lucky.
My wbc (white blood cell) count is low so if I run fever I do need to go to hospital for work ups (which knock on wood my head my missing breast whatever) has only happened once - I am still taking the full dose of the drug (some people get it reduced to help with side effects).
So my post cancer life includes no period since February 2017, daily antihormone pills, once every 3 month lupron shot and for the next 12 months 3 week’s on imbrance, one week off.
Oh and working out, running 2 businesses, blogging, being a mom, a wife, a daughter a friend a sister and whatevs.
Look for a future post about what I wish you knew about living life as a cancer patient / survivor and about follow ups. Oh and because I am so basic, I made two videos about this and could not decide which one to use -- so here's the other one :). Which is clearer / better?
Also, did you get offered a trial? Have you been on one? What can you share about it? Thanks! Super Mom Xoxo
Let's say your friend is diagnosed with cancer, or your neighbor or your kids' friend's parent - what do you do and how?
It is important to be there for your friend, if you can. Please do not worry about saying something stupid or being "too much" to your friend. All anyone with cancer wants is someone to speak to them and NOT always ask about "so are you cured?" or "so are you going to die?" - there is a middle ground.
The middle ground includes our kids - just because we have cancer does not mean we no longer have children in our lives who love us and look to us with fear and worry that one day, when they wake up, we will be "gone".
This explains how you can help those of us with cancer who are also parents... Supermom out!
I am a unicorn. I had breast cancer in my right breast and I cut it off. Well, not me, my surgeon. I knew right away I did not want to reconstruct. I wanted to just get the cancer out and be able to "bounce" back to my "normal life" as soon as possible.
For me, normal meant being one boobed. I had no idea what that really meant, though, and I spent time hiding it with a prosthetic and now I just free boob it - there's only one of them but I am still ME and I pose topless now to share my feeling of being in my skin, body positive and confident... If only I could have felt that way even with the other boob but better late than never!
I went for my screening mammograms, despite knowing it was a total waste of time. No one in my family had ever had cancer. I never smoked a day in my life. I ate healthy. I was not obese. I exercised every day. I did not think I could ever get cancer - I had better chances of learning to fly then getting cancer.
Then, what started off as a slight calcification in a duct in April 2016 was Stage 3 cancer by December 2016. Cancer does NOT care who you are or what you have going for you. Cancer does not discriminate - and just because you do not have it in your family well that just means it might start with YOU.
Know your body - I had no lump but I had a huge, nasty cancer growing inside of me. Go to your screenings, demand a screening if you think you feel something NO MATTER YOUR AGE. I was "young breast cancer" at 39 years old and since sharing my story have met women even younger like 20, 25, etc AND men too who had all been diagnosed with breast cancer after advocating for themselves.
Know your body - know that dense breasts are less likely to show up on mammograms - mammograms are not perfect but are better than nothing. Watch the video for more tips on how to know your body and you know, mammogram your boobs instead of instagramming em.
All about telling your kids you have cancer - may you never know what it is like to see them process the information or the fear...
I cried a bit making this video - it is hard for me to know that I got sick and they got hurt because of it. Cancer is something that impacts everyone in the family.
When I had to tell my kids I had cancer, they were only 6 and 9 and I was their whole world. I cared for them exclusively and balanced my work, my small business and more but I did not do anything for ME or care much about me. If only I could have learned these lessons without getting you know the C word -- but since I cannot change that, instead I just try to help others deal with it.
Welcome to my blog all about survival, being a mom, being a breast cancer survivor and the art of BALANCE.
I was blogging about life, love and being one boobed over at The Time Between Is but found that site to be better equipped to sharing the survival tactics through the nonprofit I founded called Career After Cancer. This site will be where I share my truth - my unvarnished story of balancing on one boob.
If you are also in this with me, welcome to the club no one ever wanted to join. I hope instead you are just here to partake in the voyeurism of how a modern day Type A personality learned to let go and live within the confines of this thing called "NED" where you technically will always have cancer and you try, just the same, to be the mom you once were while recognizing all of the stupid good that came out of being told, "you have cancer".
And screw me because I never would thank cancer for ANYTHING and in fact, I wish every day that I and anyone else with this disease would ALL never have gotten it and that it could be eradicated off the face of the earth - so this is my open letter, my space to be and share all that I wish people would understand if you have perfect health, embrace it, know your risks though and do not be a jerk to those of us in the cancer community who struggle scan to scan, appointment to appointment and just want to be here to embrace our kids or have kids or just to be alive.
Thanks, your friendly neighborhood superhero, cancer mom.