Dealing with Prejudice/Racism PART I

I know this blog is about my experiences as a woman living with Stage IV metastatic breast cancer, but I need to take a small break and talk about prejudice and racism.

As most of you know, I’m a WASP. I’m originally from the Midwest but I am a White Anglo Saxon Protestant. I’m married to a dark skinned naturalized citizen from Jamaica and our boys are a beautiful brown mix of the two of us.

Hey, I know I’m biased, but just look at how amazing they are!!

I’m still learning about how to deal with racism, whether overt or covert. News Flash, I’m not dealing very well with it. When my husband and my kids are treated differently, it boils my blood like nothing else. Nothing.

Recently, we’ve encountered an issue in our neighborhood. Specifically with the use of the tennis courts in our neighborhood. Ridiculous, right? How could tennis courts result in racism?

My children have been taking tennis lessons for nearly 2 years now from an amazing tennis coach that comes to our neighborhood. She is truly a gifted teacher and my boys love her. We share the time with several other families in our neighborhood. The coach is super nice, respectful, etc. She has never caused any problems and has never been late.

Fast forward to last weekend when an adult white man thought he should have the tennis court and my husband, children and our coach should leave. There are no rules in our neighborhood that would allow one resident to force another to leave a common area yet this man thought he could bully them because he wanted to play instead of the children. He pretended to serve the tennis ball into my husband’s face and kept yelling “Where are you from?” to my husband and our coach.

This happened in front of my boys.

They are 6 and 4.

They watched this horrible man belittle and be disrespectful to their father and coach.

My husband handled the situation beautifully, respectfully communicating that he would not be bullied or pushed around. He did leave the tennis court that day because the man was so awful and the boys were present and there is a second court. When my parents attempted to talk to the man, he calmed down. He apologized to my tall white father while ignoring my mother.

When we filed a formal complaint with the homeowners association and suggested remedies for the situation, we learned that this man is a known bully. He is a known racist. He is known to be extremely negative towards immigrants. He is known to use his whiteness and his height to intimidate others into giving him what he wants.

It is known.

And yet, his behavior doesn’t stop.

He has no idea what can of worms he just opened when he behaved this way towards my husband and my kids. If he needs to know where I’m from, I’m happy to tell him I arrived in Florida from Ohio by way of law school in Virginia. I suspect that’s not what he wanted to know.

It is 2019. The idea that any person is better than another because of their gender or skin color or height or nationality whatever is not only outdated, it is criminal. No one should tolerate this behavior and yet the lack of people standing up to bullies and racists and misogynists is astonishing.

The ONLY way for men like this to win and get what they want by being horrible is when the targets don’t back down and neither does the community.

You’ve been warned, you racists and misogynists, you don’t get to mess with my family without consequences.

Memory Boxes (originally published in Wildfire Magazine)

If you don’t already subscribe to Wildfire Magazine, go sign up now!!  It’s amazing and you will get content from a wide variety of talented men and women.

When my boys were placed in my arms after the planned (Liam in 2013) and emergency c-sections (Malcolm in 2015) my heart swelled and grew.  I had no idea how much love I could have for someone I’d just met and yet, it happened both times.  Ever since then, I’ve had the privilege of thinking about them before anything else and putting them before myself every day.

So, when I heard in March of 2017 that I had breast cancer in the midst of tandem nursing my boys, while I mourned at having to wean them abruptly, I knew that I had to in order to stay with them.  When I heard in June of 2017 that I was actually Stage IV and my breast cancer had metastasized to all of my bones, my very first thought was that I wanted to be with them as long as possible.  The years I’d had with them was suddenly not enough and every moment became fraught with meaning.

Since that fateful day in June, I’ve had almost two years to be with my Boys and work through so many emotions and fear and anticipation.  Anticipation of all those days and experiences they will have without me.  I watch my own mother help me with caring for them and my heart breaks for all that I will miss.  When I can bear that thought again, I’ve tried to turn my attention towards pieces of me that I can leave behind for them.

This is my list thus far …

  1. I take lots of pictures of me and the boys.  Yes, this means I take a lot of selfies and I don’t always like how I look in the pictures.  I also schedule photo shoots whenever I can for holidays and just because.  Capturing how happy my kiddos are is amazingly gratifying.   I’ve also back up the pictures in about 5 different ways just in case.
  2. I found an amazing non profit who helped me create a video for my Boys.   The non profit is Thru My Eyes.  It’s out of New York but the process of making the video was so very special and I know that my boys will treasure it. There are several non profits that do this and I think it is extremely important to leave all kinds of difference types of memories behind.
  3. I found a company that makes bears out of old clothes.  Each of my boys has a bear made out of clothes I memorialized in pictures with them and I recorded a special song I sing to them so that they can hear my voice whenever they want.  I can barely carry a tune but they don’t know that, they just love to sing with mommy.
  4. I ordered memory boxes for my Boys and my husband and I’m slowly filling them up with keepsakes and letters and books.  Books that I hope may help as they begin life without me.
  5. I started writing letters to my boys on their birthdays when they were born.  I’ve now expanded that project to write them letters for important birthdays, their weddings, graduation, etc.  It can be slow writing these since it’s hard to think of everything I’d want to say to them but I keep at it.
  6. I found a variety of cards for a variety of experiences and circumstances and am slowly making sure they have those to open.
  7. With my parent’s help, I’m trying to memorialize all of the traditions and meaning behind each of the family items my boys and nieces will get when I pass.
  8. We moved from Orlando to Miami to live with my parents.  My sister moved from New York to Miami to be with me and my boys.  I am intentionally surrounding them with people (especially women) who know and look/sound like me.  Women who will be able to help them remember me but also won’t let them want for love and nurturing.
  9. I’ve planned my funeral and we’re in the process of paying for it and ensuring that my family will only have to show up to celebrate my life.

Each of these things I’ve listed above are how I am trying to prepare for leaving my Boys.  I’m already experienced two thirds of the median survival time with them and while I hope for many more years, I also cannot help but prepare for the worst, that I only have another year or two with them.  I don’t know precisely how to cram a lifetime of my presence with them into that time but I am working to make sure that my voice will be available to them in good times and in bad times.

The hardest thing about my diagnosis and knowing that I am terminal, is knowing that I will hurt my Boys in the most profound way a mother can ever hurt a child, by leaving them.  My own memories only go back so far and there are days when I look at my 3 year old and wonder if he will remember me at all.   If I dwell on that, it’s hard to do anything at all.  By focusing on what I can do, now, I can keep working at what I can do to mitigate the loss.

I would be remiss if I end without mentioning my precious husband.  He has uprooted his life and work and comfort zone to support me in what I want and need.  His selflessness has allowed me to structure a new life that is supportive and helpful to me as I navigate our new normal.  He is an amazing father and I know that he will do everything he can to make sure our boys grow up to be men and to make sure they don’t forget.

I cannot end this post without mentioning April Stearns and her wonderful magazine, Wildfire.  She is an ally to us living with stage IV metastatic breast cancer and her publications highlights and celebrates the amazing men and women who have not allowed this disease to end what is special about them.  Check her out!

How to be an Ally

When I met my now husband, Elliot, in 2006, I’d never dated anyone who wasn’t as lily-white as me.  In fact, the area where I went to high school in Ohio was so homogeneous, that going to UCF (That’s the University of Central Florida for those of you not familiar with the Knights) for college was a HUGE adjustment in so many ways, but especially because of the diversity.  Meeting someone new, whether a romantic or other relationship, and learning to adjust to their idiosyncrasies is complicated enough, but throw in different skin tone and cultures and that can get messy super fast.

I’m not going to suggest that Elliot and I have it figured out or we (really, I) haven’t made mistakes over the years; however, after nearly 11 years of marriage (as of 2019 when I’m writing this) and knowing each other even longer, we’ve found a stable normal, mostly.  Elliot still reminds me at times when my white privilege is peeking through and parenting has been more complicated since not only are our boys a different gender than I, they also are experiencing some different things since they are much browner than I am as well.

What I have learned, as the white wife of a mixed and dark skinned Jamaican husband and the mother of two mixed race boys, is that I can say things they can’t say.  Elliot can say things I can’t say.  We’ve learned to be strategic and we’ve learned to play off each other’s strengths.  For instance, I’m pretty much a bull in a china shop at times, especially when something has happened with my kiddos; the gloves come off and I’m talking about lawsuits and asking for insurance documentation.  Elliot is super diplomatic and has the advantage of being able to interact with people he doesn’t particularly like without them knowing his true feelings.  If I don’t care for someone, they know it, the whole world knows it.  I honestly never learned to control my face.  And now I have no filter.  At all.

So, what’s the point of this?

I’ve learned a little bit about how to be an ally.

I’ve learned that there are times that I need to keep my mouth shut.

I’ve learned that I have to stand up for my kiddos in a different way.

I’ve learned that there are times I HAVE to speak up.

I’ve learned that if someone is behaving in a racist way, then I’m the one who has to call a spade a spade.

Why?  Because I’m white.  And white privilege is a real thing.  It sucks, but its real.

The thing with white privilege is that we white people don’t know and can’t really imagine the experiences of someone who is not white. Elliot explains things to me regularly and sometimes I’m completely flabbergasted, it’s 2019!!  I’ve certainly been discriminated against based on gender and treated differently than men, especially in the legal profession.  That is a good analogous experience, but it’s also not completely transferable.

What I am is loyal.  When I see my husband or, God forbid, my boys being treated differently in a negative way, that hurts my heart and bruises my soul.  Hell hath no fury like a lawyer whose loved ones have been discriminated against.  Seriously.  You mess with my people, you got issues com’n your way and I’m pretty good at using the legal system when I need to.

To me, when you love someone, then their hurt is your hurt.  I’ve not heard of a good metaphor for what animal one becomes if a spouse is attacked, but I have no problem bringing out the mama bear persona when my kiddos are attacked.  I’ll have to think of what animal it would be when my husband is treated badly–he can take care of himself and does so admirably; however, he knows I have his back and he has mine.  Sometimes that means backing down and withdrawing, sometimes that means a confrontation. I’m sure none of you can figure out which one is my preference.

I share all of this to set up what I really want to talk about.  I share all of this to explain how I’ve lived a large part of my adult life learning how to be an ally to someone whose experiences are diametrically different than mine.  I’ve also worked in the legal field advocating for foster children for nearly 20 years and most of those clients were minorities and many of those kiddos were on the spectrum. It’s been a long road and I certainly don’t have everything figured out, but I’ve picked up a few things.

While race is not the perfect analogy, there is a similar divide in the breast cancer community between those with early stage breast cancer and those of us in the terminal “club” with Stage IV metastatic breast cancer.  When I wrote a blog in late 2018 about that divide and my actual real life experiences of literal discrimination, that struck a chord with so many (it’s actually been accessed over 7000 times from 20 different countries!!) and now I can share my own blog post when I see it happening.  It’s a nice shorthand rather than having to explain it all again.

The point of all of this is this … if you want to be an ally to any community, you don’t get to dictate the terms of how that works or what that looks like. Being an ally does not mean that you tell someone else how you will be supporting them.  You ask or otherwise figure out what the community you are trying to support actually needs/wants. Being an ally also does not mean that you place your experiences on the same level as another person’s unless it actually is on the same level.

I know this from my own experiences, I tried to tell my husband early on how things should work, how we should work together, how I would “help” as an ally. He’s much more polite than I am and I realize he was so very kind to me in my earliest efforts.  I know he knew that my angst over how he was treated came from a good place and he’s such a kind man that he tolerates my craziness.  I get the side eye from him a lot and I’m better at reading him wanting me to back off, but I still go off on my own soap box probably too often.  I’m lucky and blessed and all of those good adverbs to describe Elliot’s place in my life.

I’ve not been as kind to people who have attempted to tell me how they would be my ally on their own terms.  I’ve not been as kind to the woman who tried to tell me that she had the cure for my scanxiety because she had cured hers when dealing with endometriosis.  I don’t do subtlety well.  Frankly, I have no use for vision boards or cognitive behavioral therapy or any other method that teaches someone to overlook reality and pretend everything is different than it is.

I live in the real world where the scans I have done tell me how long I’m going to likely live.  That is anxiety or scanxiety on a different level, on a terminal level.

Sometimes I wish I could invite others to live inside my head, inside my life, inside my experiences for a minute, an hour, a day.  That would be so much easier than trying to explain.  I struggle to put words sometimes together to explain, I reach for metaphors that have their own issues.

So, I’m writing this blog post to be able to share with others when this happens again, because it happen so depressingly often. 

Here are my top 10 ways to be an ally to the stage IV metastatic breast cancer community when you are not Stage IV, in no particular order:

  1. Ask us what we want to be called, if there is a label that resonates with us.
  2. If we tell you what we want to be called, use that term and not anything else.
  3. Hold space for us when we are having a tough time.
  4. P.S. Holding space means not telling us what to do.
  5. Ask us if we want to hear suggestions for remedies for whatever it is we’re dealing with.  If we say no, THEN DON’T SAY ANYTHING.
  6. Don’t give medical advice if you are not a medical professional.  That’s called practicing medicine without a license and it infuriates me just as much as people who try to practice law without a license.  There are also criminal and financial sanctions for that.  Don’t test me, I will report people and have.
  7. Ask us if we’re in a place where hearing about a different remedy that worked for you would be helpful.  If we say no, THEN DON’T SAY ANYTHING. Yes, this is listed twice. That’s not a mistake. This is a BIG DEAL.
  8. On the flip side, saying something is better than saying nothing.  Saying you don’t know what to say is better than saying nothing. Saying you have something you want to say when the time is right is better than nothing. Showing up is key.
  9. If you are selling something, ask before you start sending information about whatever product you think is a miracle.  Seriously, don’t send me info on the miracle product that you don’t know the ingredients to and if I say no, STOP SENDING IT.  I don’t want to join your team and I sure as hell won’t spend my disability money on something without my doctor’s advice.
  10. Save the meme I included above–toxic positivity DOESN’T WORK.  It’s rude and demeaning and elitist and arrogant and awful and infuriating and hurtful and mean.

I obviously feel strongly about this.  I want allies.  We metsters need allies.  The median life expectancy of us stage IV lifers is 2-3 years.  That means we die, quickly.  We need people who don’t have cancer, who are cancer free, who have early stage cancer, who know someone diagnosed, really everyone, to fight with us.  Make no mistake, we are in a battle to fund sufficient research to give us options until a cure is found. We all need to work together to make a difference for us.

Be an ally.

Ask me how.

 

Mother’s Day 2019

May, 2019 is the third Mother’s Day I will celebrate with cancer. It’s only the second Mother’s Day I will celebrate since knowing that I was de novo metastatic (meaning from the beginning) since it took a few months to figure that out after the initial bombshell in March, 2017.

Every holiday since cancer, especially metastatic breast cancer, takes on a new significance. Every time, I can’t help but wonder whether this is the last of whatever holiday it is that I will celebrate. Every time, I go a little more overboard in celebrating just in case it really is the last time. Every time, I have to consciously look away from the storm clouds gathering overhead, especially when a scan or other treatment is coming up.

As a daughter, I hope the celebrations and gifts for my mom have gotten better over the years. My mom is pretty forgiving and accepting of our efforts over the years, even the misguided ones. It makes my heart smile a little seeing how she has kept a variety of the trinkets and projects I made over the years for her. One of our most memorable mother’s days, for me, was driving together (just my mom and me) from Virginia to Florida after I graduated from law school. Being one of six means that we all rarely got our mother’s undivided attention. Her attention was and is priceless and coveted. Being the eldest means I still have 18 months of her undivided attention more than any of my siblings.

A few mother’s days stick out for me since becoming a mother myself. My first Mother’s Day as a new mom in 2013 when j finally got to celebrate as a mom. My first as a mother of two when we came home from the hospital on Mother’s Day in 2015 and I tandem nursed my boys for the first time, marveling at how HUGE my 2 year old eldest looked compared to his newborn brother. The very first gift I received on Mother’s Day that my son made for me at school, which I display proudly on my piano to this day. Since Mother’s Day happens during the school year, there are usually celebrations and trinkets and fun activities with the kiddos.

Each of these celebrations were and are a salve to the wound of watching other women celebrate Mother’s Day when I ached to hold a child in my arms. Each of these celebrations remind me how lucky I am to have an amazing role model in my own mom.

The older I get, the closer I get to the end of my life, the more I treasure time. Time to be with those that I love. Time to celebrate milestones and time to impart important lessons I’ve learned.

This Mother’s Day and every day, I am reminded to be grateful for the mothering I’ve received, grateful to be gifted the opportunity to be a mother to my boys and the awe-Inspiring responsibility it is to be a mother. I’m also reminded of those mother’s days when I longed to be a mom and my heart hurts for those families that feel incomplete.

Today, and every day, thank those people in your life who show love, who nurture without thoughts of reciprocation and who make life and love beautiful. Those people don’t have to be moms, dads are pretty good at nurturing too, as are Aunts and Grandmas and people who give freely of themselves. After all, Mother’s Day is just a made up holiday anyway. 😉

An open letter to my youngest on his 4th birthday

M, when you came into the world, it wasn’t as I’d planned.  Yes, I’m a planner, and I so wanted your birth to be idyllic and empowering and lovely and calm. 

You had other plans. 

After 26 hours of labor (with quite a few unmedicated hours of back labor because you decided to turn around) and an emergency C-Section, since the cord was wrapped around your neck and arm, you were whisked away to the NICU for some time to ensure that you were ok.  Thank God you were, but little did we know that your momentous entry into the world was simply a foreshadowing of the person that you are.

You are amazing.

You are confident.

You are a force to be reckoned with.

You know no boundaries.

You view an obstacle as simply something to be conquered.

You hear no as an opportunity to try something new.

You jump in with both feet, literally.

You run headlong into new situations, new people, new adventures.

I forget sometimes that you are still little and are now just four (4) years old.  We’ve worked hard not to compare you with your older brother, especially because we know how much you look up to him and want to be like him.  You are your own person, delightfully unique and wonderfully gifted.  There are no boring moments with you around and you are quite well aware that a cute look or hugs or kisses can often soften the upset adult when you’ve done something extra dangerous.

You are entirely extra. Extra boisterous; extra loving; extra adventurous; extra loyal; extra perfect for us, your family.

We can’t wait to see what you will accomplish with your life.  It will be stupendous, it will be awe-inspiring, it will likely be full of risk, and it will be all you.  You can do whatever you have decided to do and your Dad, brother and I will be there to cheer you on every step of the way.

Happy 4th Birthday to the amazing little boy who completed our family.

Love Always,

Mom

xoxo

Fertility, Infertility and Secondary Infertility

This is a topic fraught with so many sensitive issues and let me say up front that I am not an expert on any of it. What I am is a woman, a daughter, a wife, and a mom.

Some background on me … I delayed having children on purpose because I wanted to build my career and to spend quality time with my husband. When we got married in 2008, we were both out of our 20s; well, I turned 30 a few months after we got married. When we were ready to conceive and I stopped taking birth control, we thought it would happen quickly. It didn’t. So, we went down the road of testing and monitoring my fertility closely. I quickly grew to resent the charts and forced timed intercourse that only highlighted my continued failures.

Still, no pregnancy.

We then went to a fertility specialist and went down the road of medication; fortunately, just the oral kind. It took time and there were lots of delays, many times we got our hopes up only to be disappointed, and there were many many pregnancy tests. Going every day for a vaginal ultrasound around the time of fertility was super difficult to work into my schedule and wasn’t fun.

Then, yes, we got pregnant and our eldest boy was born in 2013. Once we decided that we wanted to give him a sibling, it was back through the fertility rollercoaster once again. Different this time was that I was nursing and refused to wean just to get pregnant. (I was a difficult patient long before I got cancer!). This time, because I was nursing, I had to give myself daily shots. After months of trying and lots of shots, we were finally able to get pregnant again and our youngest son was born in 2015.

Our two boys are exceedingly precious to us, even more so because of all the effort and time and angst to get pregnant. Nursing was even more important to me because it felt like it made up for my body not doing what it was told.

Fertility was the first time my body failed to do what was supposed to be natural and normal. Finding out that I have Stage IV metastatic breast cancer was the second time my body failed me.

When we met with my breast surgeon so that she could give me the results of the breast biopsy and tell me I had breast cancer, she asked us about fertility and what our family plans were. We didn’t know how blessed we were that she was up front and discussed our options with us directly and candidly at the very beginning. Since we’d been on the fence about the possibility of a third child, the diagnosis gave us a pretty clear and definitive answer about that. At the time, it didn’t seem like another loss, but it was.

No, my experience was not to be told I would never be a mother.

No, no information was withheld from me so that it was too late to preserve my fertility.

Yes, I have two amazing little boys who I was able to carry to term.

No, I’ve not had to suffer the loss of a child through miscarriage.

And yet, the end of the possibility of my body nourishing another child was a major blow. Immediately, the largest change was that I had to immediately wean both of my boys. We’d been nursing for 4 years, the last two years as a tandem threesome. Nursing was literally inextricably intertwined with how I mothered my children and the adjustment was devastating. Since nursing was how both of my boys drifted off to sleep each and every night of their lives, bedtime was torturous as we adjusted to weaning and the fact that I had cancer all at once.

I think the devastation of learning I have a terminal diagnosis along with the devastation of weaning masked the sadness of learning that there wouldn’t be another child of my body who shared the traits of both my husband and I. Once some of the shock wore off, I was able to feel some of that loss.

Fertility, infertility and secondary infertility are becoming less of a taboo subject over time. Women are speaking up more and more about the toll these losses take and how silence about these losses only makes them worse. So much worse. I’m not sure we ever really get over these losses and having to hide how hard it can be is probably the worst way to handle it.

Being given a terminal diagnosis means that I’ve had to grieve the loss of so many things. Even things that I didn’t really even realize that I wanted. We have to continue talking about loss, talking about grief, talking about how dealing with these things can affect all of us. Only when we get things out in the open to be able to examine them, grieve them properly and then put the loss in the appropriate context can we move forward with the grief. No one truly moves past grief, it just becomes a part of us in a more manageable way.

For now, I will focus on the amazing gifts I’ve been given, EMBRACE the reality of the here and now, and offer support when I can to those who are still grieving. When women support other women, truly amazing things happen.

ATM Mutation (Originally published in Wildfire Magazine)

If you don’t already subscribe to Wildfire Magazine, go sign up now!!  It’s amazing and you will get content from a wide variety of talented men and women. A version of this post was originally published in 2018 in the Genetics edition of Wildfire.

When I was first diagnosed with breast cancer, my breast surgeon tested for the BRCA1 and BRCA2 genetic mutations only.  When that test came back negative for both, I really thought I was in the clear and my breast cancer was just a product of cells going haywire and nothing I could pass on to my two boys, then four (4) and two (2). Wow, was I wrong.

Only a few months later, we found out that despite having clear margins in my surgery and my sentinel nodes testing negative, I had actually been Stage IV since the beginning (a/k/a de novo).  With that diagnosis, my medical oncologist decided to test for the whole panel of genetic mutations, more than 40.  I wondered briefly why my breast surgeon hadn’t done that but went along. When the results came in, I discovered that I was positive for the ATM mutation.  After the inevitable jokes about getting money from the ATM, we settled down to research and share the information with the family.

As my family has gotten tested, we discovered that the ATM mutation came from my mother’s side (she is a breast cancer survivor and was tested over 15 years ago for BRCA only, which was negative).  I’m the eldest of six (6) children and I’ve cousins and aunts and uncles—there are a lot of us to test and not everyone is super excited to find out.  Understandable.

The ATM mutation is presently linked to a moderate risk of breast cancer (tell that to the crazy cancer cells that decided to mutate and spread everywhere in my body), a low risk of pancreatic cancer (1% more than the general population) and, most recently, a risk for prostate and ovarian cancer, which is still not quantified.  There’s actually more prostate cancer than breast cancer on my mom’s side of the family, which is why we weren’t surprised when the new guidelines came out with prostate included in 2018.  The other interesting phenomenon is that the cancer appears to be getting more aggressive with each generation.

When I first researched the ATM mutation, I was surprised to discover how little there is available to read.  The genetic counselor my husband and I met with verified that it is a relatively newly discovered mutation and there isn’t much available about it yet.  My sister’s genetic counselor referred to it as an “up and coming” gene.  That language is rather astonishing and we’ve joked about being more trendy than we realized – yes, humor is a good coping mechanism, even a bit of dark humor.

One note about genetic counselors — at last count, amongst the many members of my family scattered about the country, we’ve encountered, as a family, no less than ten (10) genetic counselors. The variety among the advice we’ve all received has been astonishing. There does seem to be some differences based on geography and whether the counselors are in an academic institution; however, it is important to note that this piece of our families’ journey is as much about art as it is about science.

Despite the fact that men can get breast cancer, it is currently believed that if I pass along this mutation to my boys, they won’t have a higher risk of breast cancer; however, they would need to be screened earlier for prostate cancer.  I am thankful that the testing for prostate cancer is much more precise than for breast cancer and that treatment is typically very effective.  You see, this experience with breast cancer and genetic issues has caused me to be thankful for the oddest things.  Yet, there it is.  I AM thankful that my children will be better protected than I was.

It is hard to describe my feelings about the possibility of passing along genes to my children that could kill them.  My husband and I struggled with infertility and I had to go through a lot of needles and tests and treatments to get pregnant both times.  I struggled with maintaining breastfeeding with my eldest while we were getting pregnant with our second son because of all the medication I had to take to get pregnant.  Our children were and are wanted and deeply precious to both my husband and I.

Knowing that I may give them something so deeply embedded in their DNA that is akin to a ticking bomb terrifies me.  Plus, it is unethical for children to undergo genetic testing for something that is an adult issue.  As a parent, I have struggled with this because I want to KNOW if I’ve passed something on to them.  I want to be able to tell them that they don’t have to worry if they test negative. I want to be able to remove that worry from my list of things that I stress about daily.

But, we can’t.

Since my children are so young, discussing how I got cancer or why or any of those deeper discussions are simply not appropriate yet.  They don’t understand anything beyond basic principles and we are careful how much we share with them.  Sadly, with the life expectancy I face, I will probably never be able to have those discussions with them.

The best I can do is to focus on gathering information for them and leave them the information that they need in order to be empowered at the right time.  Like the BRCA gene, so much more will be discovered, maybe not within my lifetime, but certainly within theirs.  Knowledge truly is power and with screening and early detection, this risk may not end their lives well before a “normal” or “natural” life expectancy as it will mine. If my grandchildren include girls, they may not be so lucky.

I am thankful that I have information that will help me prepare my children and I certainly do not wish that I’d never brought them into the world; however, I regret that I’ve given them something that may cause them pain.  As a parent, I desire only love and good things for my boys.  I am hopeful that they will use the information I will leave for them wisely.

A quick note for anyone at the beginning of their breast cancer treatment/diagnosis — even if it isn’t offered, ASK for the full panel. You need to know more than just BRCA1 or BRCA2. Get the entire panel done at the beginning. I wish I had.