3.03.2015

Emotions: At Risk



  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. 





29 comments:

  1. Heather,
    Thank 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

    ReplyDelete
  2. 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!

    ReplyDelete
  3. waiting 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

    ReplyDelete
    Replies
    1. Hi Annette, did you get your results? Thinking of you.

      Delete
  4. Thank you so much for your comments! And Annette, I'm wishing you the absolute best in this journey.

    ReplyDelete
  5. Omg 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

    ReplyDelete
    Replies
    1. Is 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

      Delete
    2. I am planning a trip to Houston, tx maybe I set something up to go to San Antonio as well.

      Delete
    3. Please do, I think you will be SO happy and everything will feel "right." Sending hugs to you.

      Delete
  6. Am I going crazy or I can't see my previous message to you?

    ReplyDelete
    Replies
    1. It's there, and I just replied to it. :) It came through as anonymous. :)

      Delete
    2. Please 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.
      Is 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

      Delete
    3. Yes love, thanks so much. Going for my first MRI hope anxiety don't take the best of me. I will keep you posted :)

      Delete
    4. Best of luck. Deep breaths, headphones with your favorite music. :) XO

      Delete
  7. Hi Heather,
    Just 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.

    ReplyDelete
    Replies
    1. Sending you hugs and prayers. I'm here for you. Were you able to contact Dr. C?

      Delete
    2. Not yet, but soon. I don't think I can deal with all this stress every 6 months. :(

      Delete
  8. Reading 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.

    ReplyDelete
    Replies
    1. Please keep me updated sweetheart. I'm here. Holding your hand.

      Delete
  9. This comment has been removed by a blog administrator.

    ReplyDelete
  10. Ok, 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

    ReplyDelete
    Replies
    1. Exactly what happened to be in November. Praying its all ok.

      Delete
    2. Thank you so much Heather. You had a biopsy as well?

      Delete
    3. No, I didn't have the biopsy...I went straight into planning surgery as I never wanted to experience the feeling again.

      Delete
  11. Hi Heather,
    Just 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.

    ReplyDelete
    Replies
    1. 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
    2. :) 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