24
years ago today, my mother passed away from breast cancer. Today, I’m sitting here in my home,
alone. No kids to tend to, no husband to
talk to. Just me. Well, just the dog and me. I’m not going to work, I’m not taking care of
anyone else, and I’m going to try and deal with some emotions I apparently need
to get out. I haven’t done this in a
very long time. I always go to work, I
always push through the day, I always keep it inside. But when you start cracking in public,
breaking down your wall when friends ask you simple questions, you know you
need a break.
“We all need a daily
check up from the neck up to avoid stinkin thinkin which ultimately leads to
hardening of the attitudes.” –Zig Ziglar
When
I need to get things out, I write. I’ve
always been a writer at heart. I loved
making story books as a kid, I took as many elective courses in writing as I
could throughout college, and I’ve always been able to write my feelings down
on paper better than I could ever say in words.
I don’t think writing is a bad thing, I think it’s actually quite
therapeutic. But when writing is all you
know how to do when it comes to expressing yourself, I begin to see the
problem. I don’t cry when I write. I don’t get hugs of support when I
write. I don’t get feedback when I write. I don't even get eye contact when I write. I put it all out there, on paper or on the Internet, in hopes of getting it
off my chest, helping someone else and moving on with my life.
I’m
home today because I was told, just yesterday, that I need to cry. Not a tear here and there, but a full on
cry. A bawling your eyes out, mad at the
world, scream in a pillow cry. A cry for
my mother. A cry for my father. A cry for BRCA. A cry for a list so long that it hurts…but I
stay strong. I cry when moving away from
friends and family, I well up with tears when I see my children hurt and I
quietly shed tears in sad movies, wiping them away in secrecy. But I hardly ever cry for my thoughts, my
experiences and my memories…myself.
Over
the many years of sickness my parents went through while I was quite young I
can’t remember someone telling me to just cry.
Of course I cried in my bedroom, or at a friend’s house or with a
teacher at school when any of them asked my about my mom or dad, but I didn’t
cry with my own family. Instead, I remember
family asking me if I was “o.k.” At that
age, I didn’t know what o.k. meant, so I just said yes. I’m not the one sick. I’m not the one in the hospital. I’m not the one dying. So of course I’m ok. I stayed strong
because I thought that was what I was supposed to do for everyone else. For my mom. For my dad. I stayed strong because it was my mom and dad
who were not ok…not me. I didn’t cry for
fear of making someone else cry and be more upset. Turns out, this was called avoidance and little did I know, I’d later be ridiculed and
slandered by some of my own family members for NOT handling death appropriately
at the ages of 13 and 17. So, today, I
may or may not cry, it’s yet to be seen, but I’m going to let it all out...right here.
Today,
for the first time, I’m realizing where so much of my recent pain and sadness
are coming from. After the passing of my
mom, I have had years of worry, agony and constant reminders of death right on
my chest. I’ve always had a love/hate
relationship with my breasts. But mostly hate.
I’m sitting here today, home and alone, reflecting on my mother and all
she went through. I’m thinking of how
scared she was. How unfair it all
was. I'm thinking of her and how on Earth she was dealing with the thought of not watching us grow up. How I wish she had today’s
opportunities back then. My mother
actually asked for a prophylactic double mastectomy back then…but it was deemed
“too radical” by doctors. My grandmother
was quoted in an LA Times article written in 1991 saying;
"I thought I was helping my daughter do all
the things that were necessary. And she followed all the rules. What is
frustrating is that the results from treatment now are not a heck of a lot
better than they were when I had cancer. I am watching her two daughters, ages
22 and 14. I'm hoping the outlook will be better for them, but I'm not sure it
will. Twenty-five years after my cancer, why should I still be worried about my
granddaughters?"
I’m
now, at 38, preparing to save my own life, and it’s all just too real. My mother was 40 when she was diagnosed, my
grandmother was 40 when she had her double mastectomy, and here I am, 38,
trying to beat a family curse by two years.
Of course today is especially hard.
I’m wishing my mom had the same fighting chance I’m being given and am
preparing for, and it’s taking me on an emotional roller coaster.
I decided
to take control of my life and hopefully, stop the worry back in 2005, just
after having my son. I was going to have
the BRCA genetic test at Huntsman Cancer Institute in Utah. I had heard
mumblings about it here and there, but it was nowhere near as talked about as
it is now. This was years before
Angelina Jolie…and I’m thankful someone like her could use her platform and get
the message out to the masses today. I
thought long and hard about getting the test, even meeting with a genetics
counselor and a surgeon, Dr. Saundra Buys, at Huntsman who helped guide my husband and me through the process and come to
terms with what the results of the test could do to my family and me…emotionally. I remember the series of questions that hurt
the most and made me well up with tears…”You have a beautiful boy now. Are you done having children? What if the next one is a girl?” You see, each of my children now has a 50%
chance of getting my BRCA gene. Those questions were the most in your face,
hardest questions I’ve ever have had to answer, and probably ever will. For me, I had seen how far options had come
along to help myself, and I had faith that there’d be even more options for
them as they grew up.
I had the test, and tested positive for the BRCA1 gene (Breast Cancer), as did
my grandmother, who took the test first which helped open the doors to a cheaper test for me. On average, if you took a random sampling, about one in 400
would carry a BRCA mutation. Testing
positive, and having a long line of breast cancers in my family, meant that I
had a 65-87% chance of developing breast cancer over my lifetime, that’s hard
to swallow. Why the large spread? Depending on the doctor and the comparison
group used, I got the answer of 65% risk as compared to large average
population sample, to 87% because of my very strong family history being
compared to other very strong history family cases. I was not surprised by the results as I think
I always knew, but it doesn’t mean I wasn’t mad either. I also learned that with a BRCA diagnosis, IF
I were to ever get cancer, doctors would fight aggressively, as the genetic
mutation makes it very difficult for my body to fight cancer. But we’re not
done there! Thanks to this BRCA gene, I
now increased my risk for ovarian cancer!
What? This whole time I’ve been
focused on my ticking time bomb breasts, and now I have to worry about my
ovaries? I was angry-mad. I did the “why
me” for a while…still do on occasion.
But I also knew that having the results would somehow help me with the
“next step”…whatever that was at that time. I wanted more children and I wanted
to breast feed, so immediate surgery, breast or ovary, was not in the cards for
me.
At
the age of 28, I was beginning mammograms and ultrasounds, every 6 months. This was a hard time for me, as I couldn’t
have anything done while pregnant or nursing, so my scans were few and far
between for the next 4 years. During that
time, I kept wondering…am I developing cancer and don’t know it? Am I going to have to go through what my
mother went through? Once I had my
youngest, and I knew I was done having children, my regular 6-month screens
began. I was being steadily proactive
and that was going to ease my mind, right?
Wrong.
I’d
go in for mammograms, holding my breath both for the scan and for the results,
every 6 months. The MRIs were
worse. First I had to face my fear of
needles, a fear that began from an overnight stay with my mom in the
hospital. Then, the banging, clanging
God-awful noises that came out of that machine, no matter how loud the music in
my headphones, lead to an incomplete MRI and me to having my first panic attack
in the Fall of 2013. 30 minutes of the 45-minute
procedure…wasted. What was I doing? I felt like a hamster on a wheel, jumping
from the mammogram wheel to the MRI wheel and driving my self completely crazy
twice a year. And what were these scans
doing to me overall? Surely living my
life like this couldn’t be healthy.
November
2014 turned out to be the turning point for me.
I went in for another routine mammogram, on Thanksgiving Day. The same day my youngest was having a
tonsillectomy and adenoidectomy. I had
prayers flying out left and right that day.
My husband took my daughter to the hospital to get her settled in for
surgery (he’s the strong one), while I took the older kids with me to get my
mammogram. Everything was supposed to be
normal, another mammogram, in and out. But this time, I went in, came out and went
back in. I had never been called back
into the mammogram room…ever. My heart
raced, tears came to my eyes, and I was texting my husband ferociously while
holding back the utter panic welling up inside me. Once again, I couldn’t let those around me
see me cry. Once again, I held it all
back in order to be strong for my own kids.
Not because anyone told me to hold it together, but because its what I
was used to doing. Because it was just...me. So, another few
squeezes of the machine and I was dismissed with a follow up appointment that
night at 5pm. That night? When have I ever had results immediately read
and met with the doctor on the same day?
NEVER.
This
was it. This was when it was
happening. This was the day that would
change my life forever. I left the
building with all of my worst nightmares coming true in my mind. I was in a haze of fear while traveling in the taxi from
my hospital to my daughter’s hospital. I remember texting my BFFs on the way, not for them to panic with me, but to just let someone know I was scared. Luckily, I made it to the hospital just in time, as my daughter was just released from surgery
and moving into recovery. I put on the
scrubs, went into the OR recovery area, and held my little one’s hand. Everything disappeared at that moment. I was completely in the moment as I listened
to my groggy daughter talk through the anesthesia. I was completely there…for her. And I was thankful. I was thankful for her surgery that would help her live a better life. I was thankful for the chance to be her mother. Sure, I knew I had an appointment later that
night and I was scared, but I kept it all inside. I didn’t even have time to talk to my husband
about it all as we were so focused on the kids for the next few hours at the
hospital. As my daughter recovered from
surgery and my husband left with the three kids in a taxi heading home, I made
my way to the doctor’s office, one I'd never met.
Behind
the desk sat a cold, expressionless doctor.
The room was small, tiny actually.
She fluttered with papers from her appointment before me, opened a new,
empty folder, grabbed a pen and looked at me.
“So, tell me why you’re here.”
I’m sorry, did you not read the report from the mammogram I just
had? I must have said something to that
effect in my out loud voice, as she opened another file and simply stated,
”Looks like you have a cyst. It’s
nothing to be concerned about. You’ll
come back in 4 months to check on it.”
Really? That’s how we’re leaving
it? You’re summing up my last five hours
of panic into that? I don’t want to
“check on it” after 4 months! What is
it? What are we going to do? Where’s that preventative prophylactic
mastectomy option? Again, I must have
uttered words close to these as she then pulled out her iPad and all of her
research she’s presented. Basically,
what I got from her lecture was that she’s not a believer in the procedure and
IF I do get cancer, we’ll do a lumpectomy and figure out a course of treatment
from there. OH. MY.
GOSH! Get me out of
here…now! I found another doctor, Dr.
Tucker, by referral and scheduled an appointment with him a few days
later. Thankfully, he became the voice
of reason, the voice I needed and the voice I listened to. He knew I didn’t want to even GET
cancer. He knew that I couldn’t handle
hospitals. He knew I had seen the
effects of harsh cancer treatments first hand and how badly I didn’t want to
ever experience them. And he knew I
never wanted to leave my beautiful children because of cancer. Dr. Tucker knew.
In a matter of weeks, I was in overdrive mode. Friends who know me well just call it
“Heather mode.” I’m an information
gatherer. I’m a planner. I’m an organizer. I have been consuming my free time with
nothing but surgery related tasks. I’ve
been researching doctors in the US, talking to women from my online forum about
their doctors and results and getting as much information as I could about
which type of surgery I wanted. Implants? Stomach tissue? Keep my nipples? Tattoos? I
haven’t even stopped to really process it all.
I just keep moving forward. I’m
doing it. This is it. 10 years later, from my initial BRCA1
diagnosis, I am going to do something about it.
I’m making a choice to take my risk from 87% to 1-5%...that’s a big
deal. And my future has now fallen into the hands of Dr. Chrysopoulo in San Antonio.
The hardest part of the process has been trying to figure
out how I’m supposed to feel. That
doesn’t even make sense, right? One day I feel like I want a “goodbye
to these ticking time bombs party” with my friends, celebrating my chance at
never getting cancer, and the next day my eyes are welling up, wondering why I
have to go through all of this at all. One
day I’m sharing information with friends in a casual conversation and the next
day I’m crying at the slight mention of the impending surgery. I imagine this will continue, long after my
surgery. You see, I get told all the
time, “at least you’ll get awesome boobs out of all of this!” I’ll be the first to admit that those words
come out of my mouth too, but I think I use them in avoidance of not talking
about what we’re really talking about. I
mask my emotions pretty well, much of the time.
Remember the no crying thing? My
husband knows not to joke about me having a “boob job”, he takes my lead on the
conversations and my mood at the time.
If I have a moment of “it might be nice having perky breasts again,” my
husband follows with supportive comments.
But then I follow with a moment of me punishing myself for being so
insensitive the real situation and how dare I joke about something so serious. But it’s my life to comment on, my emotions, my feelings towards my breasts. But I’m not having a boob job! I’m having breast reconstruction. Wait, I’m having a mastectomy and breast
reconstruction. Nowhere in any document
I’ve read has it said “Congratulations!
You get a free boob job because you're BRCA+!” I’m not
going into the details of the differences between breast reconstruction and
breast augmentation, nor am I diminishing the fact that both involve surgery,
but if you’re curious about the differences, please Google it.
They are very different roads traveled.
Yes, I will be proud that I’ve taken this drastic step
towards saving my life and being around for my children. Yes, I’ll try my best to embrace my new
breasts and be proud of those, too. And
yes, I’ll wish that my mother could have had the same opportunity that I’m about to
get. No, my breasts won’t be the same, hell,
I probably won’t be able to even feel them anymore, but they’ll be mine to live
with. They won’t be perfect either, and
I’ll probably always find faults that no one else sees, but they’ll be
mine. I’ll have a constant reminder,
again on my chest, but hopefully I’ll have taken all the fear away...the ticking time bombs will have been detonated. Hopefully I’ll be able to see them as the new
me, the healthier me.
So there you have it.
24 years ago today my mother passed away from breast cancer. I’m home today to try and reconcile some
emotions I’ve had bottled up. I’ve taken
the time to examine the path I’ve traveled, the ups and downs, the curve balls
and the road ahead. I realize that there
is no right way to react to some of life’s hardest events. There’s no perfect way to handle the topic of
breast cancer. Everyone is going to have
a different perspective, based on his or her own life experiences. My view on my surgery and my outcome may be
very different to someone else’s, and that’s ok. I just might have that “goodbye to these
ticking time bombs” party…and that’s ok.
I guarantee I will document and share the entire surgical and recovery
process as well, because it’s a way for me to talk, a way to share, a way to
deal with my emotions. For me, writing
is my crying for now. Some day I might
begin to really weep as my friend wanted me to today. Maybe when this is
all over, I’ll sob like a baby, thankful that its over…for now.
Heather,
ReplyDeleteThank you so much for sharing your story! Important for all of us to keep sharing our stories. XO
Warm Regards,
Amy Byer Shainman
@BRCAresponder
BRCA1 positive previvor
Hereditary Cancer/BRCA Health Advocate
Heather, I had Dr. C in December '14. He is a legend and you chose wisely. If you need questions answered, fears squelched or mundane day to day details of recovery from Reconstruction 101 give me a shout. You can do this!
ReplyDeletewaiting on my results for BRCA2.. Is so scary. I am a mom of two beautiful girls 19/13.. My mom is a breast cancer surviver with the brca2 multations. I am freaking out. Scare, nerveous this can be a life changing for me and my girls. Thanks for your blog. Now I know I am not the only one freaking out with brca. Xoxo
ReplyDeleteHi Annette, did you get your results? Thinking of you.
DeleteThank you so much for your comments! And Annette, I'm wishing you the absolute best in this journey.
ReplyDeleteOmg Heather I'm so sorry I didn't see you message. I did. I am positive :( I already had my ovaries removed and fallopian tubes. I'm on HRT.. I was told that because I didn't have a total hysterectomy I need to take the hormone therapy. I'm still scare. I had a appointment with a plastic surgeon and I felt so used. I think he was me as $$ and not a patient. I did saw your Dr. On twitter I may go and see them. I need someone that is here for the patient not for their packets. Again, sorry I didn't answer before. So much going on. Annette
ReplyDeleteIs this Annette?
DeleteI'm so sorry you feel this way. I would be happy to set you up with my doctor's office in Texas. They are wonderful, truly. You won't feel like just another patient. If you want to contact me via my contact page, that's fine, or you can contact them directly as you can see their information on my doctors page. I would send my own girls to Dr. Chrysopoulo. Truly. XO
I am planning a trip to Houston, tx maybe I set something up to go to San Antonio as well.
DeletePlease do, I think you will be SO happy and everything will feel "right." Sending hugs to you.
DeleteAm I going crazy or I can't see my previous message to you?
ReplyDeleteIt's there, and I just replied to it. :) It came through as anonymous. :)
DeletePlease keep me up to date Annette. Were you able to see my full reply to your "anonymous" post? Here it is again just in case.
DeleteIs this Annette?
I'm so sorry you feel this way. I would be happy to set you up with my doctor's office in Texas. They are wonderful, truly. You won't feel like just another patient. If you want to contact me via my contact page, that's fine, or you can contact them directly as you can see their information on my doctors page. I would send my own girls to Dr. Chrysopoulo. Truly. XO
Yes love, thanks so much. Going for my first MRI hope anxiety don't take the best of me. I will keep you posted :)
DeleteBest of luck. Deep breaths, headphones with your favorite music. :) XO
DeleteWill do. Thank you! Xo
DeleteHi Heather,
ReplyDeleteJust got a called from the Dr. The MRI detected a Cyst on my right Breast.. At first my heart was going to fast..now I am calm. Scare but calm. Need to go for an ultrasound.. Send some positive vibes my way. I will keep you posted.
Sending you hugs and prayers. I'm here for you. Were you able to contact Dr. C?
DeleteNot yet, but soon. I don't think I can deal with all this stress every 6 months. :(
DeleteReading this blog makes me feel that I am NOT alone.. I feel you understand me so well. Allthough I have never meet you, you make feel that I am not alone.. I'm nervous right now. Ultrasound is this Friday @ 7:45am. Tears are coming down.. The unknow.. Jesus.
ReplyDeletePlease keep me updated sweetheart. I'm here. Holding your hand.
DeleteThank you so much Heather. <3
DeleteThis comment has been removed by a blog administrator.
ReplyDeleteOk, ultrasound is done. Biopsy was done.. The radiologist said she is almost positive is just a cyst, but she wants to 100% sure. She said is a oval cyst, cancer tumor are never oval. So, keep praying. Tuesday @ 3:30 results. I will keep you posted. Xoxo
ReplyDeleteExactly what happened to be in November. Praying its all ok.
DeleteThank you so much Heather. You had a biopsy as well?
DeleteNo, I didn't have the biopsy...I went straight into planning surgery as I never wanted to experience the feeling again.
DeleteHi Heather,
ReplyDeleteJust came back from the doctor office... :) so happy and thankful. I have a benign tumor. Its called Fibroadenoma. I'm sure you have heard of it. I am so relieve.. I feel like that big elephant is not seating on my back anymore... Vino is in the freezer and I'm just going to enjoy my evening with my hubby and kids. Thanks again for all your support.
I'm so happy for you!!!! That's wonderful news. Please let me know if I can be of any help from here forward.
Delete:) thank you. Will do. I so sure don't want to be in this position again or put my family thru this again. Hoping I can make it to TX in October if not in January god willing. Thanks again for all your kind words. Will keep in touch. Xoxoxo
Delete