Your Brightest Pink

This is an emotional month for many.  Maybe you or someone you know has battled, is currently battling, or has lost their battle to breast cancer.  Maybe you’ve been impacted by a different cancer and all of the awareness around breast cancer brings an unsettling feeling to your heart.  Maybe you’re wondering if you yourself, or a close relative/friend, are at high risk for breast cancer but you’ve not yet taken the leap to explore your genetics or have those difficult discussions with family members and doctors.

I get it.  I absolutely understand.  We’ve had multiple family members diagnosed with breast cancer, one of which that lost her life in her mid 40’s after a long fought battle.  One of my dearest friends mother is a breast cancer survivor, as is our pastor’s wife.  As you know, I myself carry the what feels like “it’s only a matter of time” gene and do my best to be reminded of the good health I have at the current moment.  I have yet to meet someone who is not personally impacted in some way by breast cancer.

With that said, this month should be about awareness, about remembrance, about perseverance and about supporting each others journeys.  It should be about encouragement, taking action and being the Brightest Pink we can possibly be.  A gazillion dollars is spent on making the NFL players bedazzled in pink while the stores are filled with bright pink ribbons, clothing and more to help raise awareness for the significance of this month.  Somehow with all of the pink flare, BACON and processed meats affects on breast cancer made the morning buzz.  Breast cancer and (pink) pigs?  Not the kind of “old news” data I want to spend my time in, if you smell what I’m steppin’ in (forgive the attempt at humor and irony as I mentioned pigs)…

Let me back up – while I was on my way home from an early morning boot camp, I heard the radio host sharing today’s headline news between songs.  At the top of their list, they shared that processed meat, like bacon, is linked to an increased risk in breast cancer.  Researchers followed ONE MILLION women to come to this conclusion.  Don’t get me wrong, we need to continue to compile the various environmental triggers that can impact our breast (and other) cancer risks.  We need to stay informed, educated and aware of how the choices we make can impact our health.  However, I would argue that the researchers could have landed on something of even greater significance to study and maximize these one million women in a different way!  We already knew red meat, processed meat and unhealthy foods are not good for us for SO many reasons…

I digress…

Bacon or no bacon, this month I want to encourage you to use any and all energy and courage you have to take one (big) bold step towards awareness by facing your own breast cancer risk head on.  No better time to do it than this month.  Bright Pink, along with the CDC, came up with a quick way to determine your personal level of lifetime risk for developing breast cancer.  Based on how you answer the questions, you will quickly learn what % chance you may have of developing breast cancer in your lifetime:  Average Risk (up to 12% chance), Increased Risk (up to 25% chance) or High Risk (up to 89% chance).  In 5 minutes, you can Assess Your Risk and learn valuable insight into ways you can begin to take action today.

In addition, while it may be nerve racking to take a look under the hood so to speak, your results will also come with many helpful recommendations and targeted next steps.  Your quiz results will be provided in an easy to download/print/share format and it will be encouraged that you bring them along to your next doctor visit.  I won’t spoil all of the great tools and recommendations that come after taking the quiz – you’ll have to take it and see for yourself.

Because I didn’t see much new value in learning about bacon’s risks today, I thought that sharing Bright Pink’s quiz would be helpful for those following my blog but haven’t quite mustered up the courage to take action.  While Increased and High Risk gals will have additional screening recommendations, I did want to share a quick lifestyle graph as a great reinforcement of the areas we can each control to impact our individual risks.

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Breast Cancer Awareness Month is hard and so unique for every single person out there.  If you’re on the front end of your health discovery, I can’t reiterate enough how considering taking the quiz might be your next best step.  Yes, huge leaps would be jumping into things like full on genetic testing, so let’s start small.  If you’re all over this, who in your world can you send this to to encourage them to take action?

As a BRCA2 positive “High Risk” gal myself, I am so thankful someone pushed me to assess my risk now almost 7 years ago (journey detailed in previous posts).  While I carry a lot of anxiety and worry, I am also thankful to be monitored by a large group of doctors that want nothing more than to have me avoid a diagnosis.  I’m due for my 3D Mammogram in early November and can only pray for an all clear.  The pressure of time and from my doctor group is mounting for me to make surgery decisions.  I’m just not ready.  High surveillance will have to do.  That is the absolute Brightest Pink I can get, for now.

What is the Brightest Pink you can find this month?  Would love to hear from you and learn if this post prompted you to take the quiz and turn… awarenesstoaction_copy

xox

Carey

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Passion for Purple

Wow, it sure has been some time since I last wrote and so so much has happened.  I’m learning more and more each day about genetics and the ways it can dramatically impact your life in a split second and will use this post to not only re-charge my passion for spreading awareness for us BRCA positive guys and gals, but also for my newfound passion for purple.

Jumping right back in…Did you know that carrying the rare BRCA mutation puts you at an increased risk for pancreatic cancer?  And, that even though it is rare, it is the 3rd leading cause of cancer-related deaths in the United States?  The lack of early diagnosis and often times “silent” symptoms are eerily similar to the challenges with detecting ovarian cancer in a treatable stage.   When caught, like ovarian cancer, pancreatic cancer is extremely hard to treat and fight.

While pancreatic cancer survival rates have been improving from decade to decade, the disease is still considered largely incurable. According to the American Cancer Society, for all stages of pancreatic cancer combined, the one-year relative survival rate is 20%, and the five-year rate is 7%.

These statistics are absolutely devastating to me, especially considering this “new” information recently hit me like a ton of bricks when I lost my otherwise healthy best friend and father a mere 4 weeks ago from this terrible cancer.  Below you will see us celebrate my fathers 62nd birthday with a large scale balloon release to represent the pancreatic cancer that took his life, far too young and early.

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Up until summertime, 2018 had consisted of my doctor groups closely monitoring my ever-changing “girls” as well as my ovaries that had been causing some stir, while my father had simultaneously been vigilant with his prostate health given his elevated risk in that department.  We had no idea to consider pancreatic cancer as a possibility or a reality for his unexplained back pains, body aches and difficulty eating that he had struggled with for the greater part of spring.  On Friday the 13th of July, we received the terrible news that he had been diagnosed with Stage 4 pancreatic cancer that had spread to several areas within his body.  He only survived 3 weeks and 3 days after this diagnosis.

Devastation does not do justice for the emotions I am feeling.  Especially because we all felt we were doing our BRCA2 mutant part…scanning, blood tests, more appointments, more physicals, eating well, exercising, more worry, more scans, more everything.  While my personal healing has not yet started for the loss of someone with such a profound impact on my life, one thing is certain…I am even more passionate about raising awareness for those that carry a rare genetic fate and what the recommended surveillance journey may look like.

Soon, I plan to detail my “round two” experience going through genetic testing with an amazing company that enables you to go through testing right from your home and provide an update on where my previvor journey stands and the research I’ve done recently to guide my path.

In my father’s honor, I will scream the purple passion from the hilltops and talk about genetics with everyone and anyone willing to go there.  If our journey motivates even one person to take a proactive step in discovering more about their genetics, I will feel humbled that I could play a proactive, helpful and supportive role in that huge leap.

Until next time…

#passionforpurple #brt

xox

Carey

Everything’s Gonna be Alright

My auntie sure is a smart lady, and that Bob Marley absolutely does right by his uplifting old school tune –  Everything’s Gonna Be Alright.  On this Thanksgiving Day they are both right – Everything is sure gonna be alright – and I could not be more thankful for this moment of peace over the upcoming holiday season.

As implied, I received some relieving results yesterday that my biopsy results came back benign. For 98% of me, this is outstanding news.  For the other 2%, I am left with a huge reminder that this will be an ongoing source of worry and I’ll explain why in a minute.  Of the 15 samples they took, they found some fibrocystic breast changes which are absolutely normal and happen to many ladies in their lifetime.

In addition…they did also find something they classify as usual ductal hyperplasia which is described here:  In usual hyperplasia (the most common form of hyperplasia) the proliferating (dividing) cells look normal under a microscope.  Women with usual hyperplasia have about twice the breast cancer risk of women without a proliferative breast condition [143-144].

So for now, Everything’s Gonna Be Alright.  Another MRI is scheduled for 6 months from now to check that same area and keep an even closer eye on the party that may or may not be happening in there.  This new development + BRCA gal status just really lights a fire for timing on when I should be considering a major surgery so I can fulfill my Previvor journey and beat cancer before it finds me.  I’m just not there yet.

At least I now have some experience with the MRI guided biopsy in the event this becomes an unfortunate bi-annual ritual.  If any of you BRCA gals are curious, the link above does a good job explaining the biopsy process. Good or bad, I couldn’t watch this before going through it myself as it would have added to the anxiety of the day (tight spaces + needles + more needles = fainting and panic attacks for this girl).

That aside, the video highlights all of the steps of the process and reminds me just how amazing technology and medicine are at early diagnosis.  As I laid thereImage result for john 14:27 during my biopsy, I leaned on all of the encouragement my dear friends and family had sent my way over the anxiety filled day.   One of my favorites was John 14:27.  It helped me through that day and has made the recovery afterwards bearable as well.

Thank you for the extra courage, love and support!  I need to un-trouble my heart a bit to live in the now, stay proactive as I have been and not worry about tomorrow, though I am fully aware of the road ahead.  The surgical research begins and so do considerations around timing.  Thanks to all for your positive energy and encouragement.   Everything’s Gonna Be Alright.

xoxo

Carey

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Is now a good time?

Kind of ironic that it’s almost a year to date since the last time I’ve written.  And I should know and just be prepared that this time of year always come with additional anxiety, hope and the not so fun claustrophobia and legit out of my mind panic attacks I experience being inside of that tightly spaced breast MRI machine.

For some reason, this scan felt different, more emotional, more worrisome.  And for the first time, I literally wept like my son would have if he couldn’t find his lovie before bedtime – through the entire thing.  While I called on God’s presence and strength, I fell short of accepting it and leaning on it like I know I needed to then and most certainly do now.

Looking back a few days, I had thought that was a tough morning.

When the phone rang today during a three child screaming/trying to get out the door for school circus and the nurse asked me, “Is now a good time?” I really should have said no.  I should have said that what she was about to say was NOT good timing, that I was not in a state of mind or matter to tackle what she was about to throw down at me.

Then it came.  The anything other than “all good” chat that sounded a whole lot like Charlie Brown’s teacher back in the day.  I have this terrible habit of tuning things out when they are not good.  Didn’t help I had two sobbing children in addition to my own tears that wouldn’t stop.

The long in short is, they found a concerning area they call a non mass enhancement.  We are trying to find more information and statistics around this in general and for us BRCA gals.  What we do know is that about 20% of ladies with this finding end up with breast cancer, usually at a very early stage, however this does not account for the higher risk of BRCA2 mutations.  I will have to undergo a MRI guided biopsy right away on Tuesday and do my best to stay thinking about becoming part of the 80% that have to go through a lot of pain but end up with a positive outcome and a new piece of metal as a badge of honor.

I truly expected to be a whole lot stronger when that call came in, as I knew it was likely at any point prior to me having some major preventative surgeries.  I expected this to be easier to talk about but then again, given all of the recent events with one of my sons, that inner strength has been more than maxed out.  It’s yet another reminder to me and those at high risk to stay close to your screening appointments and take the proactive approach seriously and intentionally.

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I’m hopeful and prayerful that all will be just fine, as I know there are many ladies that have had to undergo biopsies with such strength and positive outlook and all was good in the end.  Perhaps the biopsy report will mirror that of my tubes and bring a huge smile to my face being called Grossly Unremarkable as well.  You can call my girls whatever you want, just don’t tell me either of them have cancer in them, please.

To my family and friends, I’m sorry I didn’t call.  It would be far too hard for me to stutter out the words “Is now a good time?” and share something I cannot even say aloud just yet myself, nor am I ready to accept that this is happening.  Someday I’m hopeful our children will read these moments and be reminded of a tough patch in life that was overcome and a journey they themselves will never have to live through.

Hopeful to have you keep those results and outcomes in your prayers.

xox

Carey

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Just isn’t enough

She’s right, it has been over a year since I have gone into see her.  When put that way, it seems like ages, yet not long enough.  I’ve been doing what I thought she had asked though, getting my high level screening done twice per year.  I had surely hoped that would have covered my bases.  Unfortunately, it doesn’t and just isn’t enough.

Yes, I took a break from writing and yes, I guess I took that same break from going in to see the breast care team.  Perhaps it was the reality that I am a few short years away from having an extremely invasive surgery.  Perhaps it was the fact that I struggle through the “when” discussion every time I see her.  Perhaps I can’t get my arms around the magnitude of research that needs to be done to determine which type of surgery makes the most sense for me, and when.  Avoidance can only get me so far, I suppose.

The phone call last week took me out of hiding and brought me back to reality.  You can imagine my surprise when my doctors called to request I come in for a thorough exam after having just gone through yet another MRI.  But why?  Hadn’t I done what was needed?  A 3D Mammogram and a not so fun MRI every year just isn’t enough?  I continue to learn something new along my previvor journey and realize BRCA gals collectively need every ounce of their breast reviewed, scanned, poked and prodded several times per year to remain proactive in their journey.  Some cancers, particularly those that start in the nipple, are more easily found through an exam and wouldn’t necessarily be seen through the scans.  Don’t get me started on the mixture of frustration this brings me, as I relied too heavily on the conversation-free scans that I’ve come to know.

While I am confident and hopeful that I am in good shape since my recent MRI came back clean, it still adds unnecessary stress to wonder and worry about what else might be cookin’ in there.  And, for those with a BRCA mutation, everything is more likely, even if something like Paget’s Disease of the Nipple is very rare in general.  Paget disease of the breast/nipple is a rare type of cancer involving the skin of the nipple and, usually, the darker circle of skin around it.  As many as 50 percent of people who have Paget disease of the breast have a breast lump that can be felt in a clinical breast exam.  The last time the girls and I “chatted,” they were lump free, which the clean scans support.  However, having said that, the doctor called out some unique features about my left lady that will require additional ongoing “review” to make sure that everything is in tip top shape to ensure cancer doesn’t start in my nipple.  Sorry for the visual, dad.

I go back and forth.  I am ever so thankful for the knowledge that I have but many days I struggle with it.  Time is ticking by too quickly and I would just love to enjoy my kids without the little voice in my head taunting that cancer will find me before I take care of things on my end at the recommended age of 35.  I need more time, but there really just isn’t enough time.  There are constant reminders everywhere.  Sitting in the MRI waiting room two weeks ago, I had a chance to review a set of informational pamphlets.  They called out that the top category of women that need a breast MRI were ones that have been diagnosed with a BRCA1 or BRCA2 mutation.  The increase in awareness over the past few years has been interesting to watch, as doctors are realizing the role a gene that has almost a 90% trigger rate can have on a young woman’s life.  Yet, when I see a brochure like this all I hear is the clock ticking away.

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And while some may challenge that continuing with surveillance only is a better option for me, it might be helpful for readers and fellow BRCA gals to know that surveillance can in some cases actually increase my risk for cancer.  Women who carry mutations in some genes that increase their risk of breast cancer may be more likely to develop radiation-associated breast cancer than the general population because those genes are involved in the repair of DNA breaks, which can be caused by exposure to radiation according to cancer.gov.  If you were in my shoes, what would you do?  Would you listen to the medical professionals on your breast care team urging surgery or would you gamble and continue with a high level of surveillance which also may cause cancer anyway?

As much as the reality is frustrating, I need to take a deep breath and rely on Him instead of my own worry.  Yesterday my mom made a very good point when she said, “You know, He has a much greater plan for how all of this will go, Carey.”  She is absolutely right.

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I need to remember this and stay positive, research what I can and do my best to champion this knowledge and support others in their journey as well.  I need to think that someday I will be an example of strength and empowerment for my daughter.  That someday she will understand the magnitude of decisions her mama has had to make at an early age, starting with my first previvor surgery last year, all the while still praying she will not have inherited this gene from me.  I do my best to follow the “breast care plan” by relying on scans and images but will be smarter now and not avoid that in-person doctor visit where they take their analysis one step further.  I will be more thankful for them and try not to close down when they ask “when.”

Most importantly, I will try to trust in Him and follow His plan instead of the one I am trying to put together on my own. After all, doing this on my own just isn’t enough.

xoxo

Carey

 

I get it…


I get it, I really do.  The next steps, the planning, the surveillance appointments that need to be scheduled cannot be avoided forever.  It’s as if He knew I needed a subtle reminder.  It was as if He wanted to catch me off guard such that I would regroup and make the dreaded MRI scheduling phone call that He knows I am avoiding.  It’s as if He knew I went into “writing hiding” and also turned my back sideways to my next steps after I felt good that I had checked at least off one previvor surgery to date…

His message came loud and clear as I had a casual, yet emotionally unexpected conversation with my occupational therapist just yesterday.  She started talking about family and mentioned that she had recently lost her mother at the age of 60 to ovarian cancer.  She goes on to say that she was so thankful they had her mother tested for the BRCA gene just one month before she passed and she was positive for BRCA2 however  both her (my OT) and her sister both tested negative.  I listened intently as she continued to share how terrible and awful it would have been had she tested positive.  She referenced the worry she would have for her own 12 year old daughter having a 50/50 shot of inheriting the gene…that she couldn’t imagine having to make decisions on the various prophylactics surgeries…that she wouldn’t have been able to afford “down time” to recover from surgeries…that she would worry all of the time about her health and her daughters…

Oh boy, do I g11060998_10153194485025170_7863090629706530450_net it lady.  In that moment, my heart sank and I welled up with tears in my eyes.  She had no idea that not only did I feel sadness for her at the recent passing of her mother, but also so many bottled up emotions came through as she was describing what could have been, had she tested positive.  She had spent a solid 10 minutes describing my world and how thankful she was that she didn’t have to enter into it.  It’s not her fault, she had no idea.  I couldn’t muster up enough courage to tell her that I was indeed a BRCA2 positive gal and that I agree, these decisions are no fun…

My OT is so extremely dedicated to fixing yet another dysfunctional part oimagesf me, and I’m so thankful to her for all of her time and efforts. I’m thankful too that she lit the fire that I needed, thankful that He intended she have that conversation with me out of the blue.  After my emotions settled a bit, I felt empowered again to take action, to take the next steps in my (now) surveillance journey.  Hearing another story where the gene won makes me sad and moves me to take the proper steps to ensure I win this battle.

I set my dreaded MRI appointment for August.  I learned late in the game that I need to wait 4-6 months after I was done nursing to get scanned.  They need to make sure that the girls are fully “dried up” and that there are no unnecessary biopsies as a result of an old milk duct hanging out for an extended period of time.  I certainly do not want a phone call requesting a biopsy for any reason…

While I am admittedly not the most patient person in the world, especially when it comes to getting the “all clear” after an hour long MRI photo session of the girls, I am comforted in the technology available to detect early stage breast cancer.  For BRCA readers and others who are curious, an MRI (Breast magnetic resonance imaging (MRI)) is not regularly used for breast cancer screening, but may be important for those at high risk for developing the disease to consider as part of their risk management strategy.  If cancer does find me before I defeat it, my hope is that it would be caught at the earliest possible stage – stage 0 – otherwise known as ductal carcinoma in situ (DCIS). DCIS is a noninvasive cancer, which means cancer cells have only been found in ducts of the breast and the cancer has not spread past the layer of tissue where it began.  Click here to read more about who may need an MRI and some drawbacks to keep in mind…

In a little over a month, I will have checked one more scan off of my list.  Too bad this one involves an IV needle and sitting in an enclosed space for some time (if you’re claustrophobic like me, the idea of this is additionally daunting for other reasons!).  I will be happy to put this behind me and give my breast care team a free “show,” hopefully full of images so boring they will put the radiologist to sleep.  For you BRCA gal readers out there, I will later detail that appointment, as I know I had to do a lot of research on what to expect and still am not quite prepared for it all, especially the anxiety that goes along with waiting for results.

In the meantime, I will continue to embrace the knowledge that I have, using it to educate and empower women all over to be proactive with their breast and ovarian health.  I’m loving the rewarding conversations I have and presentations I get to give as an Education Ambassador with Bright Pink.  I will continue to trust in Him and see signs everywhere that I need to stay the course for myself and for my family.

I get it – it’s truly all in His hands anyways.

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xox

Carey

Grossly unremarkable…

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…”

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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. 🙂

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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.   IMG_20150411_160922_790-2

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 want mommy…

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

The reason…

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.

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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.

8f49dec40e99eb3933c16578c0ad5082The 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…

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Love you MIL.

xoxo

Carey

It’s game time…

In one week, my surgery journey officially begins.  A quick 7 days from now, the proactive steps will finally be put into motion.  My research, my prayers, my difficult decisions, all will be put into the first step towards my life saving actions as a BRCA2 positive gal.  This day came too quick, yet not fast enough.  I’m excited, yet anxious, worried, yet relieved.  Either way, it’s game time

I have decided to do something a bit more radical, a bit more hopeful, a bit more daring, if you will.  This decision came with quite a bit of resistance, as you will soon learn why.  Resistance from a loving husband that does not want his wife to succumb to ovarian cancer, resistance from a skilled doctor that does not have 100% proof that my preferred surgical method will save my life.  That resistance came at me like a ton of bricks and I wasn’t prepared mentally for how many emotions and facts I had to sort through to make the very best decision for myself and for my family.

You may remember from my previous post describing the new research behind a two step surgical approach – removing fallopian tubes now and ovaries closer to 40 to buy some more “natural hormone” time to prevent and delay the early menopausal symptoms described earlier.  Some “two steppers” will be so bold as to say that they will have their fallopian tubes out now, let their body go into menopause naturally and then take their ovaries out (normally past age 50).  One has to put ALL of their belief that ovarian cancer does for 100% fact start in the tubes to go with the second approach I just described.  I myself am going to go with the first option, a Salpingectomy  – the surgical removal of the fallopian tubes with the goal being to remove my ovaries closer to age 40.

While yes, this is all new research.l_9e614030-5add-11e1-ae55-ebbe63100001.. While yes, like my gyno oncologist says, this is all too new to put our full trust in just yet… While ye,s this is NOT an easy call to make… I am happy with my decision.  The suggested timing for ovary removal for gals like me with the BRCA2 mutation is between ages 35-40, so I am comfortable waiting until the older end of this suggested time frame.  I’m prayerful that in the next nine years the research will prove that ovarian cancer does indeed start in the fallopian tubes, which may allow me to actually keep my ovaries altogether.

Here is one of many articles I read to help me navigate through my decisions…

Bilateral salpingectomy, the removal of both fallopian tubes while preserving the ovaries, is considered a safe way of potentially reducing the development of ovarian serous carcinoma, the most common type of ovarian cancer. Increasing evidence points toward the fallopian tubes as the origin of this type of cancer. Removing the fallopian tubes does not cause the onset of menopause, as does removal of the ovaries.

And another…

Surprisingly, in the past few years, it has become clear that the most aggressive types of “ovarian” cancer don’t start in the ovaries at all.  Most “ovarian cancer” actually starts in the fallopian tube and some of these cancers start in the uterine lining cells that are shed and pass out the ends of the tubes during a normal menstrual period.

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I’m so thankful I took the time to slow down and really do the research I needed to come to this decision.  My doctor was rather intimidating and naturally concerned about my plan from day one.  She really pushed to have me consider ovary removal but did acknowledge the major risks associated with early menopause.  When I called back to tell her I just wasn’t ready for that, but that I was comfortable taking a different proactive step, I inquired if she would support me with my decision.  Within minutes, my Salpingectomy surgery was scheduled.  She switched gears quickly and I think she was thankful that I decided to do something instead of waiting to do anything until I was 40.

I have absolute faith in God that this is the right move, the right time and the best next step along my BRCA journey path.  The next hurdle I have to get through is surgery and even more important, a clean pathology report.   During surgery, doctors will remove both of my fallopian tubes.  Saline will be injected around my ovaries, cervix, etc. and then quickly collected to test for any suspicious cellular changes in both the saline and in the tubes.  If there have been any changes, I’m sure the doctors will have a good plan in mind for me and I will cross that bridge if I need to but am doing my best not to worry about the “what if” on that report.

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The healthy report is in His hands.  I have given Him all of my worry and am now into planning mode.  I will have a 4-6 week lifting restriction which is a HUGE deal in my house.  Having to depend on someone else around the clock to pick one of my three kids up out of their crib, put them into their high chair or car seat, lift them up for a big hug…all will be so hard for me.  I’m learning quickly that the risk for hernia and/or internal damage is high after a surgery like this because my insides won’t be done healing for quite some time.  However, I’m blessed to have the best nurse, husband and dad available to take care of everything.

I am keeping my mind on the game – on the end goal.  This will be a tiny piece of my surgery journey and the recovery will always come with it.  I’m hopeful my kids will adapt okay to me not picking them up for a big hug or putting my twins to bed like I have every day for the past 14 months.  I’m prayerful that my doctor will call me as soon as she can to tell me my pathology report is clean so that I can continue to pray for guidance with my next surgery step.  I feel good, empowered, and ready to take action.

Alright Courage Clinic, it’s game time

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See you next week.

xox,

Carey