What If This Kills Me?

It’s the question everyone with our mutation thinks to themselves, but rarely says out loud.  It could be because no one likes facing their own mortality or maybe you always want to put on a brave face for the sake of your family and friends… but it’s there, creeping and whispering in the back of our mind, standing right behind the cheerleader in us that’s screaming, “Don’t worry! These surgeries will fix everything!”

The answer is yes, I have asked myself this very question.  As it stands right now, before surgery, I have an 87% lifetime chance of contracting breast cancer and a risk of somewhere around 60% for ovarian cancer.  After I have both the prophylactic mastectomy and total hysterectomy, my risk will be somewhere around 1-2%.  I will have odds, with those particular cancers, better than the average person.  But the body has MANY different systems and who knows which one will eventually fail.  Not many people know it, but my risk is considered elevated for pancreatic cancer because of the BRCA1 mutation.  It is very hard to screen for and by the time a diagnosis is given, it is usually too late.  Not great news.

Now that I have thoroughly scared you, let me give you some good news.  We are still here and we are not gone yet.  Life is beautiful and should not be lived in percentages.  It is true that cancer could kill us in the future.  But you could die in a car accident today on the way to the grocery store too.  We just don’t know.  Why live in fear of something that is so completely unpredictable?  This knowledge you have been given shouldn’t stop your life, it should motivate you to live it.  So, here is a homework assignment for you:  Think of one thing you’ve always wanted to do and make it happen.  Climb a mountain, learn a language, take a class, it can be anything.  This goes for those of you without the mutation too.  Why wait for something like this to wake you up and make you do the things you’ve always wanted to do?  Asking yourself that creepy little question isn’t fun, but you are forced to really grasp the one certainty in life:  Everyone will die someday, whether it’s tomorrow or 70 years from now.  It really doesn’t matter how or when you die, it matters how you live.  Realizing that has been a gift and I can’t wait to share all the things I have planned after this small chapter of my life is finished.

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Sibling Fever

I know I have mentioned my daughters before, but let’s spend a minute talking about the kids.  My husband and I have always had the belief that kids do not need to be lied to or have things “dumbed down” for them.  So, in terms that they could understand (they are six and four) we explained what was going to happen this year.  We explained that Mommy has this tiny little thing inside her that could possibly make her very sick in the future and that having these two surgeries would reduce that risk and we wouldn’t have to worry about it.  They seemed satisfied with that and just seemed concerned with how long I would be in the hospital and if it would hurt afterwards.  As much as I want my husband with me in the hospital, I think it is best that he stay home with them and keep their lives as normal as possible until I come home.  We also explained the wonders of pain killers and that I would have to rest, but the medicine would get rid of the pain.

After that conversation, I thought we were done.  But as we get closer, more questions come up.  Way back, before my husband and I were married or even engaged, we knew we wanted a family but wanted to agree on the number of children we would have.  We both were on the same page and knew that we would have two.  Two boys, two girls, one of each, it didn’t matter.  We wanted to keep man to man defense and did not want to play zone once we were outnumbered.  We were blessed with two beautiful little girls and a week after my youngest was born, my husband went in for the ole’ snip snip.  There has never been a second of regret and we are both happy with the decision.  Neither of our kids ever asked for more siblings.  But for the past couple months, one or both of them will casually mention the fact that they’d like a baby brother.  After my little one was born, I never wanted another baby and still don’t, but it is slightly disconcerting to have the very organ that grew my babies removed permanently.  I don’t feel like “less of a woman” for losing the ability to conceive and grow a child.  After all, for the past four years it has been impossible to get pregnant anyway, with my husband going through a vasectomy.  I had the honor of carrying and birthing two little angels and I am content with that.  It is an odd feeling to know that I won’t even have the option, though.  This morning, as we were eating our Sunday blueberry muffins, was the last time they asked about a sibling and after some explaining (while carefully avoiding the “where do babies come from?” question.  I am SO not ready for that conversation yet) I think they finally get that it won’t be happening.  They are best buds and came to the realization that they just want it to be the two of them anyway.

The point of this post isn’t to whine and make people feel sorry for me.  I am ready and would do the surgery tomorrow if I could.  My point is that if you are going through this, you can talk to your kids.  They understand so much more than we think.  It has helped to make them feel useful and give them a job.  They have decided that the oldest will do all of the cooking (she wants to be a singing, scientist chef when she grows up after all) and the youngest will take care of our dog.  I am interested to see what the six year old cooks.  They know that they will have to give gentle cuddles and have concluded that they need to make get well cards every day to help me get better.  I am so lucky to have the family that I have.  If I feel just a second’s trepidation about this whole process, I think of my girls and revel in the fact that I will be around to watch them grow up and have their own babies.  Because if there’s possibly anything better than having kids, it’s having grandkids and I definitely want to be around for that.

The Waiting Game

If you ask me in two months, I will probably tell you that the nerves and feeling of impending doom as surgery draws closer is the worst part of this process and a month after that, I’ll tell you that the recovery is the worst part, but for right now the WAITING is the worst.  I am two months and 10 days away from surgery and it feels like a lifetime. There have been days where I feel like calling my doctor and seeing if we can move up the surgery, but I know that’s not possible.  Multiple people who have already gone through this say that the waiting is, by far, the most difficult part and I believe it.  I will admit, my greatest fear is that something will show up in the breast tissue before we have a chance to take it out.  I have talked to women where this has happened to them so it is a very real fear.  Unfortunately, I don’t know the earliest age of onset out of the six women who were treated for breast cancer in my biological family, so this is one big guessing game for me.  I also have to wait until November for my total hysterectomy and that isn’t even on my radar yet.  I am trying to be comforted in knowing that, within the medical history I do have, there were no reported cases of ovarian cancer in the family.  At this point in the journey, you just have to hang tight, enjoy your normal, daily life while you can and hope for the best.

While I wait, I am trying to keep myself busy.  My mom helped me send in a petition to the state of New York to release my original birth certificate that lists my biological parents’ names.  So, this is the closest I’ve ever gotten to finding out where I came from.  It is scary and exciting all at the same time.  I am learning French to prepare for our trip to Paris in November and I must say I feel so bad for anyone that has to listen to me once we’re there because I am going to butcher this beautiful language.  I stare at photos of Paris and imagine what it will be like to finally go there.  I think having that trip to look forward to will get me through recovery too.  Finally, I am starting to put lists together of what I need at the hospital and at home while I am recovering.  My husband has also been most helpful with coming up with ideas of what I can do once I am stuck in bed.  He seems intent on making me a gamer but I am not confident that he will be successful.  I can’t decide if I am dreading being stuck doing nothing or if I will welcome the break.  Something tells me having incisions and implants stretching my pectoral muscles will not be my idea of fun.

I think that’s all for now.  Once I start buying things and getting organized I’ll post a full list of what I will have with me.  If you’re preparing for surgery too, you probably already know that this waiting sucks.  My advice is keep yourself busy and savor the little things that seem so trivial before your life gets turned upside down.