On Monday, June 10, 2013 I got to share my story at the Val
Skinner Foundation LIFE Event. The room
was packed with about 130 professional golfers, donors, healthcare
professionals and company heads. I was
so nervous about keeping it together when I got up there to speak. How do you tell people something so personal,
so fresh, so in the moment without bursting into ugly tears and sobs?
Thankfully a camera crew had come to my house about two
weeks prior to record the majority of my story with commentary also provided by
my parents, sister, my husband Sean, and a couple of friends. They had spent the day with me and then later
followed me to my roller derby practice where one of my derby sisters Koko
Knock ‘Em Down Brown had organized Pink the Rink. They spoke to my derby wife Melanie aka Rinky
Tuscadero and my good friend Stacie aka Lula Brawl.
Aside about Pink the Rink
 |
| Rinky, Me, and Lula talking to Val Skinner |
I was truly honored that my derby family decided that for
one practice they would all don pink logo shirts, decorate the rink in pink and
skate in my honor and in honor of all of the other women who are currently
going through breast cancer, are survivors, or have lost the battle. I am regularly moved by the support I receive
from each and every one of my derby sisters in my league (and in other leagues
as well). Derby is truly a family and
one of the best support systems a woman could ask for. They have even started Team Slamour Doll for
this October’s Making Strides Against Breast Cancer walk in Point Pleasant
NJ. We are currently the #1 team in the
walk and I hope we can keep that spot going!
Pink the Rink photos courtesy of the awesome Gary Courtney, league photographer
 |
| D'Bree, Fire CrackHer, Duchess, Me (Slamour Doll), Lula Brawl |
 |
| Thank you Koko! Love you! |
Back to the Val Skinner Foundation LIFE Event
I arrived at the event about 1pm and the golfers were just
getting off the course due to the rain.
I quickly was introduced to the other honoree HERO Cati Stone. She is a cute little southern girl whom I
immediate liked. Her likeability factor
was a little intimidating! I’m not
little or cute and I don’t have that warm southern drawl that makes people want
to hug you. As a matter of fact, I likely
had a pained look on my face due to a mouth and throat full of sores due to my
most recent chemo treatment. Talking was uncomfortable as was eating. The luncheon was a buffet which during chemo
is a big NO NO. I had to request a separate
plate from the kitchen, which I was loath to do but did anyway.
Cati and I shared our stories with each other, had a few
professional photo ops and were introduced to some of the donors who have a
very personal stake in this fight. I worried
I wasn’t friendly enough as these type of things always make me nervous and
awkward. Thankfully Cati seemed more at
ease.
 |
| Cati, Melanie and Me |
The luncheon started and Val Skinner and Jack Ford explained
a little more about the foundation, why it was started and what they do and Amy
Perella provided a welcome to everyone.
Val started this foundation in honor of a young woman she was on the
LPGA tour with who was diagnosed with breast cancer. Like me, her doctor had told her she was fine
initially and it unfortunately cost her life.
The foundation provides funds to the Cancer Institute of NJ for their
precision medicine program and the Susan G. Komen for the Cure Foundation for
young women’s education and support programs.
They started the videos of Cati’s story and then my story (I
don’t think I can post it but I will have a dvd). When my diagnosis popped up on the screen “stage
IV, triple negative breast cancer” there was an audible gasp in the room. I thought I may have imagined it. I actually had to ask my friend Melanie if
she heard it too, she did. Wow. How I feel about this? Clearly they get the gravity of the situation
but ugh, do they think it’s that bad? It’s
very strange to be honored for something like this. It wasn’t a choice to get cancer, it’s not an
honor people are going to congratulate me on.
They feel bad for me. Hell,
sometimes I feel bad for me. I just hope
I moved them to continue to donate and to fight because for women with stage IV
breast cancer, especially triple negative, there are not enough options, there
has not been enough progress in the fight.
Thankfully Cati spoke first after our videos concluded so I had
a chance to pull myself together and push back the tears. When I took to the podium my voice was shaky
but I was able to speak and to keep it together throughout. I even got a couple of laughs, some applause,
and to my amazement at the end, a standing ovation. I noticed there were a lot of tears at the
nearby tables. I’ve included my speech
below:
"Good afternoon everyone. I would like to start by thanking all of you for being here. I don’t feel like a hero, I didn't choose cancer but you choose to be here and to give and that really makes you the heroes. I want to thank my parents and my husband and my friends for helping me in this marathon and Val for continuing the fight for her friends and Dr. Toppmeyer for being a wonderful doctor and giving me hope where others were grim.
My journey into the world of cancer was not a smooth transition. Not that anyone smoothly transitions into a life of stage 4 cancer but my start was especially rocky. Originally I was diagnosed with a hormone positive cancer at the local hospital by my home. Based on my CT scan results I knew immediately I was stage 4 and that has not changed.
Even so, the first two local oncologists I spoke to told me I should seek further opinions at larger hospitals that could offer me clinical trials because, they said, a clinical trial would be my best bet. The only chance I had.
.jpeg) |
| Hugging my amazing Dr. Deb Toppmeyer |
Hope. My god. Finally. It was like a breath of fresh air after 3 weeks of gasping. They gave me materials on the trial, had me tested for the BRCA1 and BRCA2 genes, and explained that I do in fact have options.
I already had my pathology slides mailed out to the other hospital in NYC well in advance of my appointment so I decided to keep my appointment for the next week with them just to see if they could offer me even more. When I got there they hadn’t looked at my scans that I had sent, they hadn’t done a pathology report and when I asked about clinical trials, they scanned their computer and said “eh, nothing until you are ready for chemo, which may or may not be before your wedding in June.”
The doctor asked me if I had any questions – my only question at that point was, “how fast can you check me out of here, I need to call Dr. Toppymeyer back and make an appointment a.s.a.p.” In fact, I called her from the lobby of that NYC hospital and made my appointment to start the ball rolling on treatment.
While getting through all the scan appointments and pre-trial blood work I continued to hound the other hospital about my pathology report. The day before I was set to begin treatment they faxed the report to my home. Triple negative breast cancer, stage 4. I couldn't believe what I was reading. This can’t be right. They just fax me this report, no call from the doctor, nothing, here it is. You thought you got off easy but read it and weep, triple negative.
My world was reeling, again. Triple negative. This means chemo. Triple negative. Oh my god. Now we need a new plan. How many options do I have? Isn't chemo just chemo. That’s it?! Will they have a new trial for me? How much longer do I need to wait, Christmas is coming and I can’t wait until the New Year to start treatment. I was diagnosed in October and its now December.
I went to what was set to be my first treatment appointment with this new pathology report in hand and begged them to treat me as soon as possible. Of course they had to run their own pathology report.
By Monday they had the results and a new clinical trial to offer me, by Tuesday I got my blood work and scans, Wednesday I had my port inserted, and by Thursday I started chemo. They wasted no time and they assured me that I had options.
A few short months later and I needed a new clinical trial which I started on May 28.
Having cancer is a scary thing. Having stage 4 cancer is even scarier, but having triple negative breast cancer is petrifying. There are no hormone receptors. They don’t know what feeds it, what makes it tick, how to prevent it. Right now they can only throw chemo at it and hope it works. This genetic mapping that the cancer institute is doing with precision medicine is my hope. This is how they will find the flaws, the weaknesses and figure out how to fix this. This is how they will make a medicine for me, for my tumors, for my life. I believe that this is the only way to learn more about triple negative breast cancer. This is the future. This is my cure, my savior.
Have you read books about breast cancer? Check the index for triple negative, you may find one page and what you find on that page, well, if you’re me, you threw the book out after you read it.
I’ve been told triple negative is the “tricky” type. If you ask my friends, they’ll say I’m the queen of one-uppers and I’ve really outdone myself this time. Go big or go home, I say. Boy, I should really stop saying that. My point is this; I’m looking at chemo for the rest of my life. It’s hard to even say that, never mind think that and at my age. My life is just beginning. I know there has to be a better way; we just don’t have it yet. We need these clinical trials so I have options; we need genetic mapping so I have hope.
Next week on June 20th Sean and I will be having our wedding. The one we booked the day before I was diagnosed. It’s been a long time coming. We’ve known each other since we were 14, we dated in college. We reconnected a year ago.
Technically though, we are already married. On December 29, 9 days after my first chemo session, Sean and I decided to get married in our pajamas, in our living room by one of our friends. This has allowed Sean access to me medically, it allows him to take family leave time from work to come to treatment appointments with me, it allows me to have a secondary health insurance policy. We really are just starting our lives together and already have so much on our plate.
We are trying to live through an illness that typically touches couples 30, 40 years into their marriages. I wish we didn’t have to. I wish we didn’t have this test so soon. I want to be like other couples, worrying about nonsense like what day does trash go out, what am I going to make for dinner, how should we divide the household chores.
I can only hope. I can have hope that one day I won’t need chemo, that one day a handful of pills will keep this at bay by plugging whatever genetic holes my DNA is riddled with. I have hope that precision medicine will allow me to one day be a cranky old lady with grey hair, elastic waistband pants and too bright lipstick.
Thank you."
All in all, it was a really amazing day. I have new lifelong friends in Val Skinner, Cati Stone and Amy Perella. They are truly amazing women who dedicate so much of their lives to this cause. In the end a check was presented the the Cancer Institute of NJ in the amount of $350,000 for precision medicine and $250,000 for the Komen Foundation.
I don’t for a second regret telling my story,
I would tell it a million times over to a million more people if I thought it
would help this battle.
Here are some relevant links for this post:
Your story is reaching more people than you know. You may not have set out to be a hero, but that is exactly what you are. xoxo
ReplyDelete