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What Will You Fight For?

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My brother in Afghanistan (far left): one of the many people I would fight for, sacrificing for his family and this country.

Last night, I read a very self-aware, probing article on Huffington Post, “The Most Important Question You Can Ask Yourself Today.”  Please go read it.  It is a good progression from my post about our holes.   The article poses the question, “What are you willing to struggle for?”  “What are you willing to experience pain for?”

I love this.  We all want happiness, health, wealth, a good job, great family…but are you willing to truly fight for it?  Will you make the tough sacrifices to achieve them?  That’s the dividing line.  If you’re not willing to sweat and diet, you’re not going to get the enviable body.  If you don’t put in the long, grueling hours, you won’t make it to the top of your profession.  So, what are you willing to struggle for?

For those of us that are parents, we sacrifice for our children.  Our bodies are not only stretched to all creation and back during pregnancy, but afterwards, we are kicked, poked, pulled, scratched, tugged, hit, slapped…all in the name of keeping our children happy.  We give up our own lives and goals to help them achieve theirs.  And we do it gladly.  This is the easy answer to the question posed.  But what else?  What means so much to us that we fight?

With BRCA and HBOC, every decision is hard-fought.  We willing experience the pain to survive.  Clinical trials, surgeries, chemo, radiation, experimental drugs…we do these things to live…for ourselves, our children, our families.  We do it to fight for the future and to help others.  We struggle for the chance to breathe each breath.

Cancer changes you.  It brings your life into sharp focus.  Since stepping into this world of cancer, my answers to these questions are different than they would have been before.  That doesn’t mean my answers are more noble or important now, they are just different.  Priorities change when you see your mortality in the mirror each morning.  Frankly, I miss the woman, who would have answered those questions confidently and without hesitation — I would have given you a numbered, color-coded list of my pain-worthy goals.  There would have been many of them.  Now?  Not so much.  My list is small, comprised more of faces than items.  I would give any body part, walk though fire, sacrifice everything for their happiness.  I would, gladly, struggle each day to find a cure for cancer because my son and nieces depend upon it.  These are my answers now.  These are the things that matter to me now.

So, why do you fight?  What is worth the pain to you?

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Now Let Me Pray To Keep You From, The Perils That Will Surely Come

 Kimi has defeated the odds, battling breast cancer whilst pregnant. Both she and baby-on-the-way are doing well - her positivity and strength shine through in these pics! She wanted to bare all to help raise awareness!


Kimi has defeated the odds, battling breast cancer while pregnant. Both she and baby-on-the-way are doing well. She wanted to bare all to help raise awareness.  Caption and picture by Nikki Holmes

(Programming Note from Shannon:  FINALLY getting a chance to post this.  I’m sorry for the delay!  The picture accompanying this article is absolutely inspiring.  A friend of mine shared it with our previvor group on Facebook and I knew I needed it for BRCA World.  Strength, perseverance, bravery…all that a mother should be).

(Goodness, I used to love Lauryn Hill’s “The Miseducation of Lauryn Hill.”  It was my jam back in the day.  “Zion” — the title of this article is a sampling of the lyrics — is one of the most beautiful songs about having a baby.  For anyone in a “God, I am blessed to have this child” mood, check out the lyrics.)

As our knowledge of cancer grows, so does our vigilance.  We are learning earlier and earlier about our risks.  Those of us with long family histories of cancer, are aware from an early age of its potential to strike us.  Many of us must make life-altering decisions in our twenties and thirties, when we are still learning to be adults.  We are on the cusps of our careers; our families are young, if they have even formed yet; and we are just settling into our skin enough to catch glimpses of who we might become.

Breast surgery is usually the first decision made.  For most, it is the easiest to agree to and protects from the most immediate threat.  How to guard against ovarian cancer is a much more difficult choice.  I know, for me, it is also the scariest.  Although the risk of ovarian cancer, in carriers of the BRCA mutation, is lower than breast cancer, ovarian cancer is more difficult to detect.  Dubbed, “the silent killer,” it is often not discovered until an advanced stage.  It is one of the deadliest forms of cancer among women; and only 20% – 30% of women diagnosed with a late stage ovarian cancer, will be alive 5 years later.  There are no good early detection tests.  The blood test most commonly used, the CA125, is not very accurate.  Many doctors (mine included) prefer not to use it at all, due to the unreliable results.  The only true option to reduce our high risk, is a hysterectomy (removal of your uterus) or salpingo-oophorectomy (the removal of your fallopian tubes and ovaries).

For younger women, this means making decisions about your future family and children.  It is recommended that these preventative surgeries be done by age 35 – 40 (two of my doctors recommended 35 y.o., but I know some women’s doctors have said 40, as well).  With BRCA and HBOC, your baby clock starts ticking faster the moment you become aware of these decisions.  Many women feel rushed.  They need to not only figure out what they want their future family to look like, but plan when and how they want that family to come to fruition.

There are many considerations for those at high-risk of ovarian cancer.  Eggs can be frozen.  Children can be adopted.  There is even embryo testing that can be done to determine whether you would pass on the BRCA mutation to your child.  This is most often done during IVF, when doctors can develop embryos and implant only those that do not have the mutation.

This brings up a sensitive topic in our community.  Do you have a moral obligation to avoid passing along the BRCA mutation?  I don’t have an answer to this.  I look at my son…his wide-eyed pleasure in the world.  He was a preemie that could not breathe without assistance; he fought through seizures and a hole in his heart.  Yet, he smiled constantly…from the very first day.  With tubes in his nose, belly button, and mouth, he smiled.  I can’t imagine him not being in this world, and I can’t imagine him having cancer.  Does he carry my mutation?  I have no idea.  Would it have changed my decision to carry him?  No.  Perhaps that is selfish, but my choice to have him would be unchanged.  By the time he is old enough to test, he will know about his risk.  I will make sure of it.  I am hopeful, though, that there will be a cure.  That is why I preach so loudly about it.  I need a cure for him, not myself.

Aside from all the choices we face, we must also recognize the risk.  Breast and ovarian cancer are, sometimes, estrogen responsive.  The influx of hormones during pregnancy can increase the risk of cancer in BRCA mutations (click here, here, and here for studies supporting this statement.)  Furthermore, if you have had a cancer diagnosis, you are encouraged to wait, at least, 2 -3 years before becoming pregnant, as it can increase the risk of recurrence.

Having a BRCA mutation, or a strong family history of cancer, means you are faced with a million impossible decisions.  Early in my life, I did not know if I wanted children of my own.  I enjoyed living selfishly, with nothing to constrain me.  I adored other people’s children, and had decided to be the super-cool aunt that was really involved in the lives of my nieces and nephews.  As I grew older, my dreams changed, as they so often do.  How are we supposed to make all these decisions so young?  Our lives change; our desires change; but we are forced to decide the shape of our future.  It’s unfair and impossible.  It is the high cost of cancer.

Personally, I dream of having another baby.  There are so many risks and decisions involved, my husband is not sure he wants to follow that road.  I can close my eyes and imagine a time when these decisions are unnecessary.  There will be a cure, casting all of our doubts and heartaches aside.  This is why we fight.  This is why we advocate and educate.

 

P.Ink: Replacing Loss with Beauty

I was looking around the web for inspiration for a new post.  A friend of mine posted the link to this video.  I love it.  Love every second of it.

I spoke yesterday about the Invisible scars of cancer.  The Personal Ink Project  (P.Ink) helps with the visible ones.  The idea is to pair mastectomy patients with tattoo artists and help them create something beautiful.  Not everyone wants a traditional reconstruction.  Reconstructed nipples and silicone doesn’t appeal to every patient.

A life touched by cancer is forever changed.  Trying to reconstruct what you lost is impossible.  No matter how skilled your surgeon (and they truly are artists), you can never fully replicate what is gone.  So, I understand the desire to create something different.  Something unique, that reflects what you have been through.

Married with Cancer

brca world - wedding rings(Note from Shannon:  Marriage is tough.  Without health problems added in, there are a million things to cause stress:  money, children, pets, work, extended family…the list is endless.  Mine is far from perfect, but we don’t give up.  It’s important that we cover every viewpoint here on BRCA World, including, of course, marriage while facing HBOC.  This is our first entry.  The writer will remain anonymous because she doesn’t want to hurt her husband or family.  I completely respect that and hope you do, too.  It will allow total honesty without fear of judgment or pain.)

Written by anonymous

My husband cheated on me.  I began having health problems a few years ago.  I relied on him, heavily, for the first time in our young marriage, and he cheated on me.  Usually, it was him leaning on me.  He had so many insecurities — guilt from his unfulfilled potential.  It was my job to prop him up, build his confidence.  Then, he cheated on me.  I keep saying it, because I still forget it’s real.

I found out by accident.  I suppose most spouses do.  I confronted him.  He didn’t deny it.  He tried to deflect.  He tried to reduce his role in the affair (God, that sounds like a soap opera, not my life).  He was tired of having to be “the strong one.”  This was laughable.  They didn’t actually have sex.  Yeah, right.  I felt ill.  I wanted to scream and scratch, gnash my teeth; throw him to the curb.  But, we have a young child.

People say they stay together for their children.  I always found that to be a bullshit explanation.  How does staying together, in an unhealthy relationship, help the children?  Then, it happened to me.

Here’s the thing:  I didn’t stay for my child.  I stayed because I couldn’t imagine sharing my child.  How could I live my life, seeing him every other holiday?  The thought of another woman, acting in the role of mother, sent me into fits of rage.  This is the main reason I stayed.  Sure, there were other reasons.  I loved him (I couldn’t fully remember why, at the time, but I knew that I did).  I was afraid to be single.  I am a perfectionist that can’t stand the thought of giving up on something as important as marriage.  Because of all this, I stayed.  It took awhile, but we moved on…together.

A short time later, I was diagnosed with BRCA2, and, of course (because my life had turned into daytime TV), cancer.  My husband’s words played on a loop in my head:  “I was tired of being the strong one; I was tired of being the strong one; I was tired…”  How could I depend on him?  How was I supposed to lean on him through everything that was ahead?  Would he cheat again?  Could I trust him?  I had my doubts.

I’m still going through my treatments and surgeries.  I do not share all my concerns with my husband, as I wish I could.  Our connection feels so tentative sometimes; I don’t want to risk it.  In fairness to him, he’s been very supportive throughout my surgeries.  But I always fear depending on him too much.

This is not what a marriage should be and I know it.  There are so many stressors in a marriage without health problems added in.  The strain a mastectomy can place on a relationship is intense.  I worry about how I look, if he will find me attractive.  Does he want to wander because I’m damaged?  Is he thinking of someone else when we have sex?

We don’t have sex very often, because I’m not feeling well.  Treatments tend to do that.  We talk about having more kids in the future, but what if they have these deformed genes, too?  Is it worth the risk?

These are just some of the many issues we face, on top of non-cancer-related ones.  I want a strong partner I can rely on to walk with me through this, but I worry it will be too much for him.

I Cross the Line

brca world - thinking woman(Note from Shannon:  Please welcome Galia Farber to the blog!  Check out her bio on the Contributors page.  I’m really excited to add her voice to BRCA World.  She is bringing a new perspective that we definitely need.  This is also the introductory article in a series about being single and dealing with BRCA.)

Written by Galia Farber

I recently read that there’s generally considered a demarcation line of sorts between one’s life before and after learning of a genetic mutation. I’m sure the same holds true of receiving a cancer diagnosis. Yesterday I celebrated (?) my 50th blog post – I never would have thought I’d have a blog, let alone something to blog about – but if you go back to my very first post, there it is: my life changed forever in that very moment.

Just for a bit of background: Three months ago today, I had a prophylactic bilateral mastectomy – something else I never thought I’d do – and four weeks from today, I will complete (hopefully!) the reconstruction process. Today I saw a gynecological oncologist for the first time to discuss my next steps. It’s still all so surreal, but I’m BRCA2+, which means I have had an 87% likelihood of getting breast cancer and a 54% likelihood of getting ovarian cancer. When my mom was 40 and she received her breast cancer diagnosis (she has since been diagnosed with stage IV colon cancer), I was still a child, but I just assumed there’d be a cure by the time I was old enough to need to worry myself. Alas, risk-reducing surgeries are sadly still the best option available as of now.

April 5, 2013 was the day that everything changed for me. That demarcation. That line. That pivotal moment. Whatever you want to call it, my life was forever altered, and the entire focus of my world shifted. And I haven’t thought about going on a date since. I was recently nominated for two Lone Star Emmys though, and for the first time since those four letters followed by a little plus sign came crashing into my life, I need a date.

Seeing the gyn/onc today was just another reminder that I’m single and need to figure out what I want to do with that aspect of my life. Going through this experience while single is challenging to say the least. As if you don’t already worry about your future dating prospects, you now have this added element, and at the same time are dealing with a lack of support that is just… different.

I want to be proud of my now numerous scars – aren’t they just physical proof that I kicked breast cancer’s ass before it had a chance to kick mine? (just ask my pathology report) – but the truth of the matter is, I already grapple with body image issues and low self-esteem, so how can I consider going on a date now that I’m so… different?

“Hi, you’re cute. Just so you know before you invest too much time potentially liking me, I’m BRCA2+ and recently had a double mastectomy and am going to have to have my ovaries removed sometime in the not-too-distant future. Hope you don’t want kids! Wanna go out?” Yeah, not so much.

The Most Loyal Caregivers

My new puppy, Nelly (the lab), and my constant companion JJ (the shihtzu)

My new puppy, Nelly (the lab), and my constant companion JJ (the shihtzu)

Note from Shannon:  I love these articles, but I think I made them a separate post with the sole purpose of sharing pictures of my babies — be grateful I’m only using one (I’ve got three dogs and three cats).

After my mastectomy last November, I spent a lot of time in bed.  Without the constant companionship of my pets, I would have gone crazy.  They took turns curling up next to me, knowing intuitively that something wasn’t quite right.  Turns out, they may have known a lot more than I thought.  I read an article a couple weeks ago about cancer-sniffing dogs.

Dogs are now being trained to sniff out ovarian cancer.  Crazy, right?  Well, an article on Fox News describes the amazing accuracy with which this can be done.  By the time a tumor is found on the ovaries, the cancer is, often, very advanced.  Dogs have been able to use their keen sense of smell to find tumors before they have been detected.  Animals are just wonderful.

While searching for the link to the above article, I came across another.  Click here for a truly interesting Huffington Post article about breast cancer in dogs.  Dogs get breast cancer.  According to the report, dogs are exposed to many of the same toxins that we are and, as a result, develop cancer (as we do).  The hope is to study the canines and learn more about the toxins that cause the disease.  They cross-reference the toxins that both humans and dogs are exposed to, adding more credence to the issue of environmental exposure.  It has the potential to advance research into the cause and cure of breast cancer.

All the more reason to head to your local shelter and save the life of a dog.  Or, at least, hug the one you’ve got.

Boob Sweat, Shaving, and the Other Sexy Quirks of Reconstruction

My reconstruction with expanders.  Notice how far out to the sides the expanders are, making shaving impossible.  The circles drawn on the top of my chest mark the ports, used to fill the expanders.

My reconstruction with expanders. Notice how far out to the sides the expanders are, making shaving impossible. The circles drawn on the top of my chest mark the ports, used to fill the expanders.

We all know about the bumps, ripples, and divots that come with replacement boobs.  But there are many other, unspoken quirks that come with reconstruction.  What we go through is, almost, comical.  My experience has been to laugh at the unexpected curve balls.  We go through the surgeries to prevent, or get rid of, cancer.  To me, it’s worth it, though often, very strange.

Nothing makes a girl feel sexier than shaving her boobs.  This is what happens when doctors construct you a new set.  You end up having to shave them.  You get these lovely expanders placed where once you had breasts, and they blow them up like balloons every couple weeks.  Aside from the pain of stretching your muscles, you get the wonderful experience of armpit boob.  The expanders roam right on under your arm…where hair grows…and you end up having hair on your boobs.  Your options are to let your freak flag fly and grow out this gorgeous hair, or shave it off.  Choosing the latter leads to another “I feel pretty” moment:  razor burn on your boobs.  Nothing says “hello, sexy lady,” quite like these little red bumps.  For most, this improves once your permanent implants are placed.  For me, well, I still have a VERY hard time shaving under my arms.  There’s a weird little indention in there that is too small for a razor.  So, my hair removal is never quite complete (despite the yoga-style arm pretzels I’ve attempted to get in there).  Special, right?

Another alluring side-effect of breast removal and reconstruction, is boob sweat.  Good Lord, I have the worst boob sweat, nowadays.  I swear, it’s like every other pore has closed up shop and the only ones left open for business surround my glorious new chesticles.  Light grey shirts are an instant no-no and bras, while not normally needed (these puppies aren’t going anywhere), are a must on days over 50 degrees.  With the constant perspiration, comes the persistent fight against breast breakouts.  I’ve turned to washing my chest every night with pre-surgical soap to fight the acne that just won’t quit (I highly recommend this, as it seems to be the only thing that works).  And yet, despite the sweat, my boobs stay a mild 65 degrees all year round — personalized cooling in the summer, and heat during the winter!  All for the low, low cost of my real breasts.  Quite the bargain.

Foobs (“fake boobs,” for the uninitiated) are odd little (or big, I suppose) things.  I curse them at least once a day.  I’m grateful for them, though.  When my great-grandmother had her mastectomy, reconstruction wasn’t possible.  The surgery left her devastated.  Today, there are so many different options:  fat transfers or expanders, tattooed nipples or skin grafts; saline, silicone, or cohesive gel implants.  The surgeons are true artists.  You get to feel as close to “normal” as possible.  These wonky, sweaty, cold little things are my new normal and finding the humor in them is a far better alternative than not having them at all.