I found myself back at the Courage Clinic Monday to confirm the good news of my clean pathology report and get my belly checked out by the doctor.  All reports showed “clear of malignancy” in my fallopian tubes, which was absolutely what I had hoped and prayed to hear.  I had feared having to go back in to get my ovaries removed, had they found any cellular changes occurring in my tubes.  Thankfully, my tubes were so dull and lacking of any extra attention that the report actually described them as “grossly unremarkable…”

While this description made me giggle, I would have to disagree with the content.  I happen to think that my tubes were pretty darn remarkable.  They were healthy lady parts that had stayed the course, ones that didn’t have any funny business happening or growing without me knowing.  If this new, emerging research can 100% prove that ovarian cancer does indeed start in the tubes, they will have done their job and will deserve an A+ in my book.  They would have remarkably helped me conceive three beautiful children and remarkably stand for the first of many surgeries in my previvor journey.  I can only pray that my ovaries cooperate and remain remarkable in their own way until it’s time for them to be removed as well.

While this great news was SUCH a relief to hear, I must admit that I have had to work through a bit of frustration on my end.  I am not healing like I would have thought.  I can only hope and pray that if my kids inherit the BRCA mutation from me, that they will have much easier decisions to work with than the ones that I am currently navigating.  I pray they will not have to have major surgeries throughout their adult life and that they can keep all of their remarkable body parts in tact.

While these life saving surgeries are necessary for a BRCA gal like me, I didn’t process or consider that I am slowly being physically “recreated” as a result.  That there is a new “me” in progress…one whose tummy and future breasts will never look the same.  I am absolutely okay with and even proud of the three new physical scars I now have, as they will remind me of the courage I found to go through with this first surgery.  The part that is hard for me to accept and get used to is the lumpy scar tissue and excess swelling (that the doctor warned may be permanent) that makes my body look quite a bit “off” and extremely noticeable in a comfortable shirt.  Being a very practical person, I focused more on the timing and the type of surgeries that would be needed for me along the way and why… leaving out the emotional considerations of post surgical pain, additional body image changes and challenges as a young woman, and how it really would feel to not be able to pick up my kiddos that want nothing more than a mommy hug.

It’s somewhat embarrassing to publicly admit that I have moments of weakness, that my recovery hasn’t been perfect…all while I got the best news I could have hoped for.  I know others are in my shoes and may or may not acknowledge the ups and downs of this journey as you don’t feel you have the right to.  I’m here to tell you it’s all a part of the process…the goods, the bads, and the overall realization that you will be a different “you” on the other side of it all.  You’re not being negative, you are being real.  You are being proactive, empowered, determined…but you are allowed to be challenged by all of the changes and also the results, good and bad.  I’m better at giving this advice in my new role as an Education Ambassador at Bright Pink and not so great at taking it – so for you BRCA gal readers out there, this encouragement is for you. 🙂

Speaking of encouragement, this cup of coffee from a dear friend came at the perfect time.  The package reads “It’s what’s on the inside that counts.”  This came after day 10 of wearing yoga pants, oversized tops while feeling uncomfortable with the new “me.”  My mom also offered great advice and encouraged me to be proud of what that new woman may look like…even if I’m not ready to accept her just yet.

Lastly, my three year old niece had “written” a message that really resonated with me, one that kept my head right and looking forward, instead of back.  One that reminded me that I need to do whatever I can to be around to see a future where my niece and my daughter hopefully don’t have to go down the path I’m on…but that they can look back and be so proud of their mom and auntie.   

I remain positive and proud of the path thus far, but working on healing my body and my mind in the process.  Thanks for all of the extra strength each of you have given me along the way.  I think you are all truly remarkable. 🙂

xox

Carey

I may have gotten a bit cocky.  I may have spent the day emotionally and physically numb, leaning on the courage and strength everyone reminds me I have.  Through this all, I never quite wrapped my mind around the potential physical pain I would be put through along my previvor journey.  I have spent more time thinking about my next chess move, my kids needs and care, and how my surgeries would affect my husband and family.   The sense of empowerment I have felt about these difficult decisions did not leave time for me to plan for the annoying physical pain that I would have to put my body through.  It sure hit me like a ton of bricks last night when I heard my daughter cry out at about 11pm “I want mommy” and my body quickly told me I was unable to get out of bed to even give her a quick hug.

Yesterday went by faster than I would have thought.  My surgery was not until 1pm, which if you’ve ever had surgery before you know how brutal this time slot is.  You cannot eat anything after midnight, so spending the morning both hungry and anxiously waiting was not the best combination.  Thankfully I was distracted by the amazing text messages and phone calls all morning from dear family and friends.  You have no idea how much all of those words of encouragement mean to me. 

I didn’t have much to say all morning.  My amazing husband drove me to the hospital and held my hand through the silence.  He took the time throughout the morning to remind me how proud he was of me and how thankful he was I was doing this for our family.  While at the hospital, a team of wonderful nurses got me settled in around 11…the red carpet treatment began.  I was dressed in a hospital gown that actually heated up, was prepped with an extra large IV needle, and was greeted by my doctor with a huge hug.

They wheeled me in for surgery around 1pm and put me right to sleep.  They proceeded with a successful salpingectomy done laparoscopically, making three incisions and pumping my belly with gas so they had full visibility of my insides.  I woke up about 3pm in a waiting room…in an entirely new gown.  In my haze, I quickly realized how vulnerable this whole process has made me, first emotionally and now physically exposed.  In addition, I about gasped when I first saw my stomach after surgery…I looked about 4 months pregnant and had what looked like mini golf balls under my incision points due to heavy swelling in those muscles.  Several nurses attended to me, ensuring I was tolerating both the aftermath and nausea from the anesthesia, along with keeping my pain level manageable.  They must have dosed me up well because other than being exhausted, I felt pretty darn good walking around after surgery.  My husband was brought back in, let me know the doctor said everything went perfectly and that she would have my pathology report in in the coming days.

We headed home and I was greeted by three sets of running legs coming in for a big mommy hug.  I was able to sit down and soak up the hugs and kisses with the help of others to keep wandering hands and feet off of my belly.  My appetite had not returned so I spent the remainder of the evening on the couch drinking tea to soothe my sore throat from being incubated during surgery.  Overall I was uncomfortable and extremely swollen but my pain was more than manageable.  I took half of one of the pain pills they gave me, even though I didn’t feel like I needed one just yet.

Then, it all happened at once.  I heard my daughter cry “I want mommy” and I quickly realized that the IV pain meds had more than worn off when I couldn’t get up to check on her.  I had flashbacks from when I was recovering from my csection, that pain of not being able to get out of bed on your own, having it hurt to move your legs and the overall feeling of not being able to move more than an inch without my body reminding me of the surgery.  I spent the rest of the night rather uncomfortable and fought my husband on which pain meds to take.  I finally gave in to the “good stuff” which gave both of us a few hours of sleep.   I felt terrible for keeping him up all night and for being angry at my hopefully short lived physical restrictions.

I know it will all feel a million times better in the coming week, but for now I’m trying to be a good patient to nurse hubby and stay positive.  My daughter woke up at her usual 7am time and the first thing she asked was, “Is mommy feeling better?” Such a thoughtful three year old.  I was brought to tears for a moment in prayer, as I asked the Lord to please please ensure that if my daughter and niece inherit this mutation that they have much easier decisions to navigate, ones that don’t involve painful surgeries.  I thanked Him for getting me through my first surgery along my previvor journey and asked for his quick healing.   Despite the physical pain I am experiencing, I am reminded that the whole goal of all of this is to be proactive with my health so that I will always be around to hear my (someday adult) kids say, “I want mommy.”

Xox
Carey

You can never prepare yourself for the phone call from a loved one when they tell you those three words, “I have cancer.”  You would have never practiced what to say in response, or how to feel, or how to shut off the tears so you can be brave and optimistic right there in that moment.  You would know deep down that for many cancers, the survival rate is high and everything might be just fine.  You would still feel afraid, unsure and overwhelmed, as hearing that word alone brings a sense of intimidation and uncertainty, at least for me.  This exact moment happened this week.  This exact moment is my reason…

Cancer has found my courageous mother-in-law (or “MIL” as I like to call her) by way of uterine cancer.  We don’t know much just yet and pray that her appointment next week will provide more clarity on the stage and necessary treatment associated with this diagnosis.  Though she received this news, she remains strong and positive, with the hardest part so far involving making the exact phone call(s) I just described.  I cannot possibly understand what she may be feeling by having to say those three words aloud to her family and friends.  I can only hope that the extra hugs, her grand kids pictures and videos, Easter sugar leftovers, and every day distractions can keep her mind distracted enough until we all learn more.

My faith has sure came in handy lately, as I quickly changed gears in the past few days to figure out what I needed to do to be there in support, encouragement, knowledge and recovery for her.  I was reminded over and over again to trust in His plan, trust in His timing and trust in His road map.

Thankfully, the Lord has already helped with navigation.  Strangely enough, my MIL was directed to the same exact doctor group as me.  So she too will walk through the doors of the Courage Clinic, which provides a bit of comfort for all of us.  I’m confident in and eager to hear the doctor’s plan for her on Monday.  I won’t get too far into the details of her health here on an ongoing basis, but I do ask for extra prayers for her with her diagnosis, treatment and recovery.  I pray that she will soon enough say, I am a survivor and pray just as hard that she will never, ever have to call a single person again to say those three words.

The timing of this all couldn’t be more confusing, yet more clear with the direction I need to take with my own health.  I was quick to think that I should postpone my surgery for months so that I could be the very best nurse, driver, and advocate for her health that I could.  A dear friend reminded me that I can still do all of these things and staying the course with my own health will allow me to continue to do these things, which is absolutely true and I am ever so grateful for that conversation this week.

As I prepare mentally for my surgery and remain positive for my MIL, I will continue to remind myself of the reason for doing all of this.  The reason He let me know of my BRCA2 mutation when He did and the reason I need to take as many proactive steps as I can to hopefully be in control of my breast and ovarian health.  I certainly do not have the courage like my MIL and am even more certain I do not want to have to ever, ever make the brave phone calls she has had to make this week.  She is one strong woman and know she will kick her cancer out even faster than it showed up…

Love you MIL.

xoxo

Carey

I have many days that start with a big pit in my stomach.  The pit could be the result of a terrible night of sleep as my mind may have wondered all over the map, or even a good kind of pit that stems from great anticipation for the positive proactive steps I will be taking with my own health.  Either way – that pit seems to hang with me most days.

Like many others, I’ve recently grown rather fond of one type of “pit” – that being Angelina Jolie Pitt.  I’m sure you have heard about the recent stories regarding her recent surgery, where she underwent the removal of the ovaries and Fallopian tubes (prophylactic bilateral salpingo-oophorectomy, or “BSO“).  I’m so thankful to her for sharing her story with the world and encouraging others to take a proactive look at their own health, including me.  As silly as it sounds, I appreciate the fact that now when I discuss my BRCA “world” with someone, I or my husband can reference Angelina Jolie Pitt, making it much easier for that person to understand what a BRCA mutation is and may mean, even if that’s at a very high level.

Two years ago, as a BRCA+ young woman, Angelina had a prophylactic mastectomy to essentially eliminate her breast cancer risks, which was a major surgery with a rather lengthy recovery.  I’m in awe at her strength, courage and ability to make these tough decisions rather quickly after she learned of her BRCA1 mutation.  She also discussed quite candidly how having her ovaries and tubes removed was a much more difficult decision, even if the recovery was much different than that of her prior life saving surgery.  Here’s why…

Having your ovaries out puts you straight into early menopause.  Big deal, right?

Wrong…

There are some MAJOR lifestyle changes that can occur from going into early menopause.  I’m not just talking about hot flashes, one of the most commonly discussed menopausal symptom you may be thinking about.  Until faced with my own decisions about ovary removal, I too did not fully understand the risks that come with menopause, especially if you are thrown into it 20+ years earlier than your body naturally would have done so on its own. Compared with women who go through natural menopause, women undergoing premature menopause spend a greater portion of their lives without the protective benefits of their own estrogen.

Menopausal risks are no joke and can vary greatly from person to person, without a clear crystal ball to understand how it will affect you vs. the lady sitting next to you.  These risks are why BRCA positive gals like me are faced with really hard decisions relating to timing the various life saving surgical options.  The laundry list of menopausal risks is long and very overwhelming, but here we go…osteoporosis, early onset dementia, heart disease, weight gain, mental fuzziness,changes to hair, skin & nails, hot flashes, night sweats, pain during intercourse, increased anxiety or irritability, the need to urinate more often….the list goes on.  I am most bothered by the first three, osteoporosis, dementia, and heart disease.  There is not enough research done to truly show what the long term affects on young women thrown into menopause will look like.   So for me, making sure that I preserve my hormones as long as possible is important to avoid some of these major health concerns.  I don’t want to be alive at 50 with dementia or heart disease – that will not be a fun outcome for my family when my goal is to preserve a healthy life.  Ugh, the pit returns…

On the flip side, many, like Angelina, go on hormone replacement therapy (HRT) to manage these menopausal symptoms I am dreading.  My doctor groups will NOT support my use of HRT because I still have my breasts – being a BRCA2 gal, I am more susceptible to breast cancer fueled by estrogen.  While HRT can effectively manage menopausal symptoms, it is uncertain whether they are safe for women with BRCA1/BRCA2 mutations. Studies in women without these mutations have indicated the combined (estrogen plus progestin) hormone therapy increases the risk of breast cancer.  

I need a diagram to highlight the fun, confusing circle that all of these decisions are thrown into.  In short – I need to find a way to reduce my chances of getting ovarian cancer, but in removing my ovaries I would be thrown into menopause.  I can’t counteract early menopause and the lovely symptoms described above with hormone replacement therapy as it could increase my risk of breast cancer.  See where the pit comes from?

Let’s talk about timing….current expert guidelines recommend that women with BRCA mutations undergo bilateral salpingo-oophorectomy (removal of the ovaries and fallopian tubes) between the ages of 35 – 40 or after childbearing is completed.  However, ask any doctor and they will give you a different age in which they feel women with the BRCA mutations should have the BSO surgery.  “We’re really quite pushy about oophorectomy,” one doctor noted.  From their point of view, it is the only sure fire way to eliminate risk, since there is no effective screening for ovarian cancer.  My doctor only sees the “after childbearing is complete” portion of these recommendations and feels strongly that I need to act now, even if I am only 31 years old.

I get it, I really do.  My ovaries need to come out.  I am just not sure that I am ready to part with them just yet.  I am encouraged that there is a movement of surgeries happening for younger BRCA gals like me, ones that want to be proactive but aren’t ready for the forced menopause.  New research suggests that some ovarian cancers may actual begin in the fallopian tubes. Some experts have proposed that “interval salpingectomy”—removing the fallopian tubes and leaving the ovaries intact until after natural menopause—might lower risk for ovarian cancer in high-risk women while avoiding the negative side effects and long-term health consequences associated with oophorectomy at a young age. After menopause women would then undergo a second procedure to remove their ovaries.

Many doctors, like my gynecological oncologist, do not support this surgery just yet.  There is not enough evidence that removing the fallopian tubes can and will reduce my risk of ovarian cancer.  When I brought this concept up to her for the first time last month, she shut it down as quickly as it came out of my mouth.  I was very overwhelmed by the pressure I felt to do something now.  I naturally started to get that immense, not so good pit in my stomach when the doctor reminded me that she has no way to detect ovarian cancer prior to it developing into its deadly stages.  I know she is the expert and I can only imagine that it sincerely pains her to treat ovarian cancer patients each and every day.  The last thing she wants is to have a young woman like me back in her clinic with cancer, when she could have done everything in her power to convince me to throw my ovaries out with the trash.

This appointment was my first true ‘call to action’ appointment, since I know I am done having children.  I know my next step is to be proactive with my breast and ovarian health in a way that makes the most sense for me and my family.  I am ever thankful my mom was at this appointment with me.  She doesn’t even realize what it meant to have her walk through the doors of the “Courage Clinic” with me, side by side.  That her presence alone was the support I needed that day, not to mention I needed her clear mind to ask the tough questions I could not sputter out on my own.  I do believe that appointment truly opened my mother’s eyes as well – as she now understands the risk/benefit weighing game I have to play with my own health and how hard these decisions are to navigate.  My mom is my rock and I’m so thankful for the strength she gave me, that “I could cry right now but I won’t” face that most of you have seen.  I get that from her and it sure comes in handy these days.

My dad visited this week where we discussed my very recent surgery decision.  It felt so refreshing to hear “Carey, I’m proud of you for making a really difficult decision that we are confident in.  We know you did a lot of research and we will be here for anything you need as you recover.”   The hug that came with that spoke volumes.  To be there for me is to understand…to support…to give out extra hugs.  My dad understood in a way that is unique to both of us.  He has read the research about his daughter so that he can be there to support my decisions in the midst of navigating the anxiety and weight of his own high risk challenges.

Thank you for the many texts, emails, prayers, surprise coffees and extra hugs lately.  Those speak volumes and turn my “pit” into a positive one.  One that makes me feel empowered, supported, in charge of my health.  Thanks to my dear husband for putting up with me as my anxiety and call to action has been at an all time high since meeting with my ovarian cancer specialists last month.  Thank you Angelina for sharing your strength with the world and giving me that extra push I needed.  Thank you for my faith in the Lord’s plan with all of this – he has definitely been the shining light that has brought me to peace with my recent decision.

Stay tuned for my surgery update…

My pit remains, but I know it’s in His hands.

xox

Carey