Month: March 2015

My new normal…

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Ever since I found out that I was a BRCA2 carrier, I followed the rules and got the recommended mammograms and/or ultrasound screening every six months.  While a huge part of me was ever so thankful that I had the opportunity to “check” on my breast health so often, it was also a constant reminder of my high risk situation.  The check ups were a part of my new normal, a normal I am still getting used to.

To be honest, most of my breast care appointments are a bit of a haze.  Before any scans are done, I get a clinical breast exam and “the talk” that included a kind nudge from the doctor about my plan.  They were first eager to know when I would be done nursing so they could do the MRI.  While not a typical “screening ” tool, experts now want high risk gals like me to undergo a breast MRI every year, since it provides a much better view of the breasts.  I found this post that explains the use and benefits of an MRI rather well in case you are a BRCA+ gal yourself and are curious about what types of imaging your doctor may recommend if you have not met with a breast care specialist yet…

Breast magnetic resonance imaging (MRI) is an imaging test that creates detailed pictures of the inside of the breasts. Although breast MRI is not regularly used for breast cancer screening, it may help detect breast cancer in its earliest stage for some women who are at high risk for developing the disease. The most common type of breast cancer discovered at this stage (stage 0) is 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. 

My breast care team will be happy to learn they will be able to do an MRI on my girls within a few months once I’m done weaning.  While they would agree pumping/milk production is a really good thing for my breast health as I covered in a previous post, they are even more anxious to get a baseline MRI done to ensure they have full visibility into anything that may be in its earliest stages.  They are also anxious to learn when they can get the green light to remove my breasts, something I have not had a clear reply to.  I quite frankly shut down when it’s brought up, since I’m not ready to go down that road just yet.  I will FIRST be tackling my surgery options to hopefully prevent ovarian cancer since that is something that cannot be caught early.  I will cover my breast surgery options and timing in a later post, but until then, be patient with me as I continue to make difficult decisions surrounding my breast care surveillance and future surgeries.

I digress…

Last month, I had probably my most emotional imaging appointment to date.  I was due for a breast ultrasound.  When I arrived to the Courage Clinic, they told me that they would be using a new ultrasound machine on me that day, one that is known to better detect cancer in ladies that are high risk and/or have very dense breasts.  Fantastic, yet another bit of royal treatment for me that day.  Instead of the normal ultrasound “wand” like most of you have probably seen or personally experienced from pregnancy, injury, or other scans, I had the pleasure of lying under one of these fabulous contraptions for the afternoon…

The tech was sweet, made small talk while doing her thing and then left the room for what felt like 45 minutes.  I sat in the room by myself during this time and did my best to stay calm.  Before long, in walks the tech with the radiologist who very quickly blurted out, “We are going to need to re-scan your left breast.  We see something.”  She did her best to try to reassure me that it might be nothing, but that she saw a suspicious spot she needed a better view of.  I laid back down and let the tech do her job while I stared at the ceiling.  She left the room and said she would be back once the radiologist had a chance to look at the close up of “leftie.”

In that moment, I was scared.  But yet, I was hopeful.  For a few seconds, I was even thankful.  I said a quick prayer, told God this was in his hands, and prayed this wasn’t anything other than silly breast tissue dancing in the wrong spot.  After 20 minutes, the radiologist finally walked back in and said, “You are all good.”  I could have hugged her right then and there.  Whew.

But wait, I will have to go through this again in six months.  As I drove home, I got pretty emotional about my new normal.  I thanked God for my health and for watching over me in that moment.  I asked him to stay with me as I stick with my close surveillance plan for my breast care until I am ready for surgery.  I joked with him that I would appreciate my next imaging visit to be a bit more boring.  I could do without the dramatics of the extra scans, the radiologist in and out, and being left alone to wonder if the BRCA mutation caught me before I could catch it.

While a creature of habit, I never thought that at the age of 31 I would have to have such emotional appointments as a part of my normal routine.  The scans, the wonder, the waiting…the hoping and praying that I don’t have to hear “we found something” and wonder if they truly did find something.  I’m going to have to get use to sitting inside those small rooms waiting for the radiologist to come in and give me the clear, knowing I would have to return for another round six months later and say the same prayer.

I much prefer the more simple routine pleasures of my every day life – coffee that my barista of a husband makes me every morning, a refreshing 30 minute jog, stories and bath time before bed with my kids…the list goes on.  In all of my worry, I will continue to be gracious and thankful to the Lord for all he does each and every day, working in ways I can see, and in others I have yet to discover.  I truly am appreciative for the amazing technology that will ever so carefully assess my breast health, for the red carpet service at the courage clinic, for the doctors that specialize in the BRCA mutation.

In the meantime, I am still working on getting to know my new normal…only a few more months until I meet the MRI machine that hopefully will have a pretty boring story to tell…

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Until next time,

xo Carey

It’s time…

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My twins are 14 months old, my daughter is three.  I can’t hide behind being pregnant anymore.  Any doctor I have met with has made me feel like I am a ticking time bomb.  You see, when I was pregnant or nursing, I could delay the reality of any major surgery to greatly reduce my chance of getting breast or ovarian cancer.  However, now that my ovaries have no further use other than to perhaps grow cancer cells, most doctors would not understand why I would want to wait another second to have them removed.  Same goes for my “girls.”   Others challenge that once I am done with nursing, why would I hesitate to undergo major surgery to chop them right off?

Let me  back up a bit and get you up to speed with how I got to this point today.  Back in December of 2010, my aunt approached me about getting tested for the BRCA gene mutation.  You see, cancer has been no stranger to my family, specifically on my father’s side.  My grandfather had lost his battle to prostate cancer and my dad’s female cousin had lost her battle to breast cancer, all within a week.  Shortly after, my great aunt (my grandfather’s sister) continued to battle both breast and ovarian cancer AND my godfather/uncle also got diagnosed with prostate cancer – both since have passed away from this terrible disease.  Three of my dad’s other cousins have had and survived breast cancer as well – one of which was male.  Do we sense a theme?

The amount of loss my family has faced due breast, ovarian and prostate cancer has been heartbreaking.  My grandfather was my hero and my godfather was such an amazing uncle, father and husband.  Losing them to the same disease was so hard on all of the loved ones left behind.  To learn from my aunt that there was a test that would detect whether or not I was more likely to get cancer was a bit overwhelming after what we had all been through.  At the time, I approached my father about getting tested, but he refused.  Rightfully so, the wounds were so fresh from losing his father and learning of his brother’s diagnosis, he couldn’t handle yet another potential bit of bad news.  I decided to get test anyway without him knowing, which was such an extremely hard decision.

In late January of 2011, I went through genetic testing through my OBGYN office.  My 60 year old doctor said to me, “I have never had to call anyone back to tell them that they are positive, so I’m betting I won’t have to with you, Carey.”  After two weeks of painful waiting, my doctor called and after saying his name, he was silent.  In that moment, I just knew.  I somehow found the courage to say, “Doctor D, I won’t even make you say it out loud, I’m positive aren’t I?”  His voice trembled as he said “Yes, I’m so sorry…”

It was as if I was given a cancer diagnosis right then and there.  My doctor was so scared of and nervous about the positive test result, making me feel even worse.  I felt bad for him as well!   He quickly referred me to a genetic counselor and suggested I get in touch with groups like FORCE and Bright Pink for support.   

To bring this full circle, now I was in a position of understanding that I had inherited the BRCA2 mutation from my father, however was not in a position to yet share this with my parents as they didn’t want my dad to go through testing.   Personally, I had absolutely doubted that there was some test that could actually accurately define that I would basically one day get cancer.  It felt like a bit of hocus pocus and I really didn’t believe it.  Until I had to.  It was clear to me that this gene was the reason that so many of my relatives have had or lost their battle to cancer.  At the young age of 28, I was given a full deck of cards with so many emotions attached to each hand I would potentially lay out.  Not to mention, I had to carry the weight of some troubling news about my father’s cancer risk as well.

Within weeks of learning about my positive test result, my husband and I met with a genetic counselor.  I was numb and to a large extent, sad and then angry and then sad all over again. The counselor lost me when she said that my lifetime risk of breast cancer was 89%… I am guessing my family is what is bringing UP the averages, so the counselors have me preparing for the when vs. the might unless I undergo some major surgeries by my mid 30’s.  You want me to cut off my WHAT??  Having to recreate who I am emotionally and physically…I wasn’t even 30 yet when this news hit.

That said, the counselor had done her very best to encourage me by going through all of the things that I could do to take charge of my health – these included enhanced screening, prophylactic (risk-reducing) surgery, and chemoprevention drugs.  The topic of children came up, which really put the timing of my decisions into perspective.  In short – I needed to have children asap so that I could have my ovaries out and breasts removed to ultimately save my life.  While my husband and I wanted a big family some day, we weren’t prepared to have to start trying so soon, nor did we know that our “trying” felt like we needed to get pregnant now or else…it surely wasn’t the romantic “let’s make a baby” experience many couples get.  At the time, I felt like that entire experience was robbed from us, since all we could think about was that we needed to make our family, like yesterday, otherwise we would be pushing too close to the time when experts greatly urged BRCA positive patients to consider surgery that would no longer allow for us to conceive and/or breastfeed if we did have children.

Within a few months, we were blessed to learn that we were pregnant with our daughter.  Knowing that I was going to be a mom certainly put everything into an even better perspective for me.  On my up days, I could absolutely find hope and confidence that everything would be alright.  I tried my hardest to avoid thinking about what I was up against with regards to my own health realities and just enjoy each day as it came.  I did end up sharing with my mom, who then shared with my father, the news of our BRCA2 gene mutation.  My mom could just tell I wasn’t the same.  I was making decisions a bit more quickly than I had in the past – donating more money, going on more family outings, buying the forever home I always wanted.  My mom knows what a conservative person I am, so to see me make some major decisions rather quickly and emotionally, she called me out on it.  My answer to that “I’m living like there is no tomorrow.”

I should have mentioned earlier that I had let my older brother in on the “secret” news shortly after learning of my BRCA positive diagnosis.  He was a good sounding board since neither he nor I chose to tell our father out of respect for his own wishes.  My brother went through testing himself and unfortunately was also positive, increasing his risk for prostate cancer.  We now both have a 50% chance of passing this along to our children, something you better believe we would rather NOT have in common.  My brother is a smart, successful family man and I know the worry is his heart is there, but he sure does not show it.  He is living out his own dreams and is wildly successful.  I don’t know if he has ever admitted to me that he is now fueled with extra ambition under him with what he now knows.  Either way, I can tell he’s living his life to his fullest personally and professionally, enjoying every minute he can with his loving wife and two amazing kids.

By mid 2013, my daughter was barely a year old when we learned we were expecting again.  I had spent that last year enjoying every minute of my little girl and was able to nurse her right up until I got pregnant with double the blessing – twin boys.  As much as I was shocked to learn we would be having twins, it was another moment for me that I knew the Lord was on my side.  He knew I wanted three kids but that my time to conceive was running out.  He absolutely blessed us with a two for one deal that I am SO grateful for.  My family could be complete and I didn’t have to worry about squeezing in a third pregnancy just before I needed to go in for surgery.  We are now a family of five, and I am so thankful for the beautiful, healthy children God has blessed us with.

My boys went full term and were a lot of fun from day one.  Let’s talk about one of their favorite bed time rituals – breastfeeding.  While many do this naturally, some don’t at all, and some just can’t, I was on a mission to ensure my twins had breast milk for as long as humanly possible, for so many reasons.  Breastfeeding made me feel like my breasts were actually doing good, since I now had such a love/hate relationship with them.  I am confident my husband felt the same and had grown to despise them over the past few years.  I don’t blame him, but it certainly changed things.  My self confidence in that department was close to zilch, but I continued to focus on the positives.  I thanked the man upstairs for giving me a way to provide good nutrition for my kids.  Not to mention, I knew that the longer I breastfed, the more it would protect me from getting cancer. As experts state (in way that actually makes me smile) – making milk 24/7 limits breast cells’ ability to misbehave.  Click on the hyperlink in that prior sentence to read the other reasons breastfeeding helps lower breast cancer risks.

On the other side of the coin, my surveillance options are a bit limited as long as I am producing milk.  My breast care group is eager to get a baseline MRI on my breasts, but cannot do so until I am done nursing.  While a traditional ultrasound and mammogram “will do” for now, they really need a deeper look at my breast tissue.  I will dive into my surveillance journey in a future post.  Having said all of this, my twins are approaching 15 months and get a majority of their nutrition from table foods and drink both breast milk and whole milk in sippy cups.  I might finally be at a point where I can no longer hide behind creating and pumping milk for the boys.  Perhaps I have hit that stage in my life where I need to face my breast and ovarian cancer risks head on with no further mask up.  I actually have to put my big girl pants on, dive into my surgery options and timing and take ownership of something that I am actually privileged to understand about my own health.  Being pregnant and/or nursing the better part of the past four years really has allowed me to avoid this exact moment.

But, It’s time…

My journey continues…

xox

Carey