Because she suffers...

When I was growing up in Philadelphia, I always thought my Aunt Isabelle was the coolest.  I loved to run errands with her and take walks around my grandmother's neighborhood after dinner with her.  She is several years younger than my mother, but in my child's mind, she was WAY younger, as in teenager or babysitter aged; the idea that she was actually a contemporary of my parents never really crossed my mind.  Maybe this was because she was single, or maybe it was because her lifestyle was so different than the one I was used to, but I felt really cool if I was around her.  Especially if it was her and I alone.  We left Philadelphia when I was 8 years old, but visited a couple times a year, and I continued my admiration for Isabelle.  No matter what she talked about, she did so with such authority and conviction.  It was hard to imagine that anything she said or thought could possibly be wrong.  I seriously remember conversations I had with her prior to moving away; conversations that must have taken place between the ages of 5 and 8 years old.  I guess when it seems so important at the time, it's hard to let go of.
After we moved to North Carolina she and one of her friends took a road trip to visit us.  I don't remember a ton about the visit except that they wanted to visit the "amusement park,"  PTL that was owned my Jim and Tammy Faye Baker back in their hey day.  PTL was the ultimate golden calf and people would travel from everywhere to visit it, whether they were supporters of the Bakers or curious gawkers.  I went on the day trip with Isabelle and her friend.   I felt like the coolest kid in the world because here I was, no parents around, getting to hang out and laugh at the insanity that was Jim and Tammy Faye's Jesus wonderland with my cool aunt and her friend. 
As I got older, became married and moved even further away from Isabelle, our visits have become much more infrequent.  It's just not extremely doable to jump  in a mini van with 4 kids and drive from south Georgia to Philadelphia on a long weekend.  Despite the distance, Isabelle and I have always remained close though phone calls and more recently frequent emails.  I still have that child like trust and belief that  she has 100% knowledge about everything she says despite my overly healthy adult bred skepticism.

I remember the moment this winter when my mom told me that Isabelle was diagnosed with ovarian cancer; the same disease that had only a few months prior claimed the life of my mother's other sister.  For a second, the air in the room stopped flowing. Everything froze. I knew enough about ovarian cancer to know that a diagnosis of such is not much more than a death sentence.  Suddenly all I could think of was that the last 10 years of phone calls and letters were inadequately pitiful. All I could do is shake my head in silence.  In fact, as I look back on that moment now, still that is all I can do.

Thankfully, God has used Isabelles's illness as vehicle to really strengthen our connection.  We email several times a week and talk on the phone much more frequently than before.  My aunt is a tremendous servant of the Lord and even through her illness she has been administering His word and sharing his glory fervently with me.  Every breath she takes, she does so for her savior and she is overjoyed to share His message of salvation and grace.  It is her incredible love for Christ and total faith in her everlasting life with Him that offers me so much peace. At the end of her illness, whether it is tomorrow or in 5 years or beyond, she knows where she is going and who she will be with and she could not be any happier about the prospect.

But unfortunately cancer has a very ugly reality to it as well.  Isabelle has felt awful.  Her cancer has spread and she has had to endure nausea, chemotherapy, and low white blood cells.  Despite her faith, she is human.  She gets scared, and irritated and overwhelmed.  She is suffering; and her suffering is considerable.
And her suffering is unfair.

After her sister, Adele's diagnosis with ovarian cancer, it was revealed that Isabelle carried the Brac2 mutation making her more susceptible to breast and ovarian cancer.  Unfortunately, she was already sick before she could receive preventive treatment, but it was Isabelle's illness that spurred my sister and I to be tested.  Perhaps because she was the second aunt to be diagnosed, or perhaps just because it was her, but something about Isabelle getting sick suddenly made everything hit so much closer to home.

And of course, we are positive for the mutation as well.

I have now had my hysterectomy.  The doctor removed everything because microscopic ovarian cells can exist even after the ovaries are removed and still cause cancer years later.  It was a relatively easy surgery and did not really impact my life much at all.  Because I had foresight, I will not suffer the same fate that my aunts have.  I am so very thankful that I was able to receive this knowledge, but struggle greatly with the implication of the cost of which this knowledge has been gained.

I am safe, because she suffers.

The night before my surgery Tucker and I were talking about how nice it would be when it was behind us and we no longer had to worry about the likelihood of me suffering with ovarian cancer.  As we were feeling giddily empowered at the bullet we were dodging he brought the reality back to earth;

"I have to remind myself that your preventive surgery isn't going to save Isabelle."

 I am sure this seems like a no brainer, but when I am feeling like I have the key to the future and the holy grail to a cancer free life, it is an amazing letdown to realize that no matter what I do to save myself, I can not do a thing for Isabelle. 

She will continue to suffer.

I am so thankful for what her illness has given me, but I am devastated that because she suffers I am safe.

Booby Healing Fashion

I have maintained a pretty positive and upbeat attitude about this whole process.  I didn't let it get me down when they told me I inherited an almost 87% risk of breast cancer.  I barely batted an eye when I learned my risk of the usually fatal ovarian cancer is way above that of the general population.  I calmly and with determination scheduled my surgeries to have the potentially offending parts of my anatomy removed.  Like a model patient, I have read and studied all there is to learn and prepared myself for all foreseeable complications.  I am so well versed on the topic of Brca mutations that the General Surgeon very frighteningly told me I appeared to know way more on the topic than he did.  (umm, so you're the guy whose gonna cut off my boobs???)  Truly, I have been uncharacteristically cool as a cucumber.

So isn't it kind of strange that I had a minor freak out in Target this evening?   I had previously mentioned  to Tucker that it was suggested I stock up on over sized button down tops and super stretchy t shirts.  We started in the Men's Department.  I thought I would appreciate the fact that nothing would be fitted there.  Guess what?  Nothing was fitted there, but they all looked like men's clothes! (duh!)  To a woman who is about to have her female reproductive organs and breasts removed, femininity is a must have!  We wandered over to the Women's Department. I found several brightly colored button downs but was more than a little bummed at the idea of me having to shell out  good money for this new summer wardrobe.  Whatever.  I'll be fine...UNTIL...Pajamas!  What the hell!  Pajamas should be among the most benign products on Earth!  Not so, says the woman who soon won't be able to lift her arms!  Right off the bat we spied some button down nightshirts that seemed to be perfect.  However, upon closer inspection they were just a more modern version of your grandmother's mumu. I just couldn't go there; a 36 menopausal, boobless woman does not a mumu wearer make.  All of the beautiful, brightly colored soft pajama sets were for all those fancy ladies who CAN LIFT THEIR ARMS OVER THEIR HEADS!  The indignity!  Sleep time has always been my most favorite time of the day (or night), and here I am in the middle of Target panicking over the fact that I will never sleep again based on the lack of availability of appropriate post mastectomy jammies!!   In the end, I walked away frustrated and scared; leaving Tucker in the Lingerie Department all by his lonesome.  (Where apparently he ran into a woman from church!)  He very lovingly chose 3 very stretchy, very bright tank tops that I can step into if need be.  Crisis averted. (ish)

So the moral of this story is that I won't be naked this summer.  No.  That's not it.  The moral of this story is that this is hard stuff I'm going through, and countless other women go through.  No matter how self-assured we are in our decision, we will have those freak-out moments.  And we will get over them.  We will follow this path until we have eradicated as much of the risk we have inherited as possible.  And we will praise God for the opportunities to freak out at our husbands in Target.  And we will show God our gratitude by mentoring others as we have been mentored by those women who have traveled this road before us.
 And we will do this all in our brightly colored Target button downs. 

You Raise Me Up

I often marvel at how God talks to me.  For years, I have been learning how to listen to His voice.  Unfortunately, I tend to  need the thunderbolt moments to understand His messages even though many people seem to hear his voice in the most subtle of ways.  I do believe His voice is perfect, and I have heard everything I have needed to hear when I needed to hear it, yet I'm quite the imperfect human, and as such I fear I will miss the boat as it sails past.  Not so.

My Brca journey has been humbling and a little scary.  As much as I do not really like to admit it, the fear of the implications of my positive test results and impending surgeries have been overwhelming at times.  I am moving full speed ahead in the process because I truly do not want to subject my family to a cancer diagnosis.  This is something I feel very strongly about.  Alas, I am human, and often fragile, and sometimes a lost little girl wandering around a great, big scary place looking for shelter and comfort in the arms of her Father.

The good Father always keeps His promises.

I have been teaching at the same school for about 8 years.  The women there are like my sisters.  The families there are part of my family. Although, we know each other well, what most people do not know, is that in a past life I was a singer.  I was no where near the strongest, or most technical, but I studied with a voice coach for years and years and sang everywhere and all of the time.  It was a huge part of me that just simply did not carry on into my adult life.  (except in the shower)  However, perhaps on a dare, or maybe as a joke, my dear friend, Constance, suggested to the school director that I sing for graduation when she was looking for a soloist for the ceremony.  For some reason beyond my understanding, when my director asked me if I would be willing, I calmly shrugged my shoulders and said, "I guess so."

Having not sung publicly in over 10 years and lacking all manner of musical confidence, I began to prepare for my solo; You Raise Me Up.  In the midst of my journey through the Brca jungle, I suddenly found myself in a whole new realm of frightening.  Not only would I be vulnerable and potentially humiliated, but I would be so in front of people who I cared about deeply.

And then came His thunderbolt:

"When I am down and, oh my soul, so weary;
When troubles come and my heart burdened be;
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be."

This was not simply about me helping my director out.  This was not a way to get my foot back in the music door.  This was how God chose to speak to me.  He told me all I needed to hear, and He made sure I heard it over and over again as I toiled away with the pianist.  In the shower, in the car, throughout the work day and as I cooked dinner I heard these words.

Today following my solo, I met with the plastic surgeon who will be recreating my breasts. Throughout the entire process, the part I have  feared most is reconstruction. Today, as the fear and anxiety began to permeate through me, I heard it again, " I am strong when I am on your shoulders..."
 Thank you, Father. 

Still Truckin' Along

Still trucking along with my fabulous Brca2 positive self.  Without a doubt, as my surgeries get closer, my nerves becomes more frayed.  I have never doubted my decision in having the surgeries, but the realities are becoming less hypothetical.
In a moment of self empowerment, I decided to commission a special quilt to accompany me during my journey.  I have always been a blanket lover and the idea of a beautiful, bright cocoon seemed more than appropriate.  I traveled with an incredibly talented artist/quilt maker to a fabric store where we planned and plotted my "recovery blanket."  My requirements were that the fabrics be bright and random (as am I!) and that many different textures be incorporated throughout.  The resulting modge-podge was fantastical! Now, when I imagine the upcoming struggle, I also imagine this glorious blanket there to comfort and cheer me.  It is amazing to me how much this project has refocused my anxiety.

As things stand now, a complete hysterectomy is scheduled for June 3rd.  This surgery will be laproscopic and robot assisted.  (pretty star-trek, huh?) I should require no more than a one night hospital stay and a week of rest at home before I feel back to my wonderful Caroline self.  Although the ramifications of menopause seem somewhat daunting, I feel up to the challenge and truly hardly phased by this upcoming process.

But...then... comes...the MASTECTOMY...

Today I met with the breast surgeon who will be performing the operation.  I appreciated his candor and wit.  Nothing puts me more at ease then when I'm among people who are able to find humor and lightheartedness in overwhelming circumstances.  Although, he did not downplay the seriousness of the surgery, he certainly conveyed an aura of do-ability.  Of course, his job is only part of the northern hemisphere surgery. (My loving term for my breast surgeries)  I am to see the plastic surgeon next week.  The vast majority of my prophylactic surgery-related anxiety comes from the process of reconstruction.  Seriously, folks, some of the procedures seem a bit barbaric, but I digress.  Once I meet with the plastic surgeon, my mastectomy with reconstruction surgery will be scheduled.  (The current plan is to have it done within the month of June, as well) This surgery, of course, will require a longer hospital stay with a more intensive at home recovery.  Oh, my Jesus.  This is where I begin to hyperventilate.

Nothing worth fighting for comes easily.  This will be no exception, however, once my surgeries are complete my risk of the female cancers associated with my  deleterious genetic mutation will be almost negligible.  This is why I'm fighting.  I grew up knowing how cancer has plagued the women in my family.  I have listened to the heartache in my Aunt Adele's lover's voice as he described her final years struggling with ovarian cancer.  I have prayed for and with my Aunt Isabelle as she now is fighting this deadly disease.  Because they have suffered, I can be saved, and for this I fight and thank God for the opportunity to do so.

Previving

I can't say that I was surprised that my results came back positive.  My sister had already received  hers and they were positive.  My chances of recieving the gene were 50/50, but I knew in my heart what I've always known; I would one day have to face hard decisions because of an inherited high risk of cancer.

Ironically, I felt relief when I received my results.  Being positive meant I could be proactive about my health.  I am a fix it and forget about it kind of person.  There was never a real doubt in my mind what I would do with the information that the test results provided.

I have 4 kids, each  who have busy schedules and need me to be present.  While a cancer diagnosis doesn't necessarily mean certain death, it does certainly complicated the logistics of family life to put it mildly.  I want to avoid putting my babies through the crisis.

I have elected to have a preventive bilateral mastectomy as well as a complete hysterectomy.  Although once thought of as a radical intervention, this is now becoming quite the norm in Brca positive women.  Once these surgeries are performed, my reproductive cancer risk will drop dramatically, and quite possibly save my life.

As with any choice, I have had to weigh the potentially severe consequences to choosing prophylactic surgery.  At 36 years old, I will be thrown into immediate menopause when my hysterectomy is completed.  I will learn to juggle new found menopausal side effects while finding the correct dose of hormone replacements which I will be on for years. Early menopause is also linked to an increase depletion of bone strength.   I will have close to 95% of my breast tissue removed in a three hour surgery.  I will awaken from surgery with several drains attached to body to help remove excess fluid.    The breasts that I was born with and fed my children from will cease to exist.  Over time, I will have reconstruction, and although I will once again have "breasts," they won't be "my breasts."  They will be synthetic and  man-made in a lab.  I will not only have to learn to adjust to the new look of my body, but also a new feel of  unfamiliar body parts.  I will do all of this while recovering from two major surgeries.  To date, I have never had surgery.

As daunting as my choice sometimes seems, I feel confident that it is the best thing for my kids and I.  I have been given a gift of knowledge from my relatives who have gone through cancer .  Because of their struggle, I have learned I am at risk, and because of my risk,  I can save myself.  I can previve.


http://www.facingourrisk.org/

Brca2... Knowledge is power.

I'm about to embark on a crazy life changing journey of sorts, and in an attempt to keep all things "positive" and proactive, I'm going to chronicle the ups and downs.   So here it is.  The good the bad and the slightly too personal for a public blog.

I grew up knowing there was a lot of breast cancer in my family.  My grandmother's mom died of the disease when she was just a little girl.  After her mother and several aunts had breast cancer, my grandmother also was diagnosed.  Thankfully, she survived the disease, but my mom was always vigilant about her own breast health and reinforced to my sister and I the importance of screenings.

Several years ago, my mother's oldest, little sister, Adele, was diagnosed with ovarian cancer.  For many years, she struggled through countless treatments and surgeries.  She succumbed to the disease this past summer.  When Adele was sick, Isabelle, the younger of my mother's sisters took a genetic test to screen for the so called "breast cancer" gene.  She tested positive for a dangerous mutation in a tumor suppressor gene. (Brca2- pronounced brack-a two) The variant found in her gene gave her an 87% risk of breast cancer and raised her risk of ovarian cancer to almost 50%. (Way over what the general population faces). Isabelle decided that she would have a hysterectomy when she retired, based on the result of her test.  Unfortunately, before that could happen, she was diagnosed with ovarian cancer.  She is now the second sister in the family to suffer from this horrible disease.  My mother, had a hysterectomy several years ago for  unrelated health reasons.  She will be the only one of of the 3 sisters not to struggle with this very deadly cancer.

Given the high rate of breast and now ovarian cancers in our family blood line, and the knowledge that the dangerous mutation is present in our family, my sister and I decided to each be tested for the gene.  We both tested Brca2 positive.  We both are at a highly elevated risk of developing breast and ovarian cancers.  Knowledge is power.