It's My Hyster-versary!

Happy Hyster-varsary to me!  A year ago today, I had a prophylactic hysterectomy after finding out of my BRCA1 status.  There have been a few occasions when I've gotten sad about not having the option to have more children, but for the most part, I still feel really good about my decision.  Having had several friends have babies over the last year has helped; I can get my baby fix any time I want.  And, I can wear white any time I want (yes, I'm even sporting it after Labor Day).  And no more periods. And, since I had my hysterectomy, I'm getting to skip 5 years of hormone suppressing therapy due to my breast cancer.  Bonus!

I'm reminded that His plan is what's best for us, even though it isn't our plan.  Several things aided me in discovering my breast cancer; Of course, at the time, I didn't know how things would line up, but looking back, I can absolutely see His plan.

First I discovered I was BRCA1 positive.  Then, decided to undergo the hysterectomy, as ovarian cancer was what had haunted the women in my family for decades.  After the hysterectomy, I started  hormone replacement therapy.  Even though my cancer was not estrogen fed, the HRT caused my lump to become more prevalent.  Without that lump becoming more prevalent, I likely would have chalked the lump up to hormonal changes.  I would have accepted the erroneously false negative mammogram that said I was in the clear.  I would not have pushed to undergo the prophylactic mastectomy.  The aggressive cancer would have grown.

The take-away:  All these things were tough.  Waiting for the testing result was tough.  The decision to not have more children was tough.  Surgery was tough.  But, WE CAN DO HARD THINGS.  He leads us through hard things to prepare us for something down the road that He can see and that we cannot.

Counting my blessings tonight. As a football is whizzing past my head as I type this.  And the Chief's are blaring on the tv.  I wouldn't want it any other way.

Thoughts During Treatment

Work has started back up for me and I don't have much time to write. But, I did want to quickly write this down, as I keep this blog not only to educate others about the walk, but also to document my own journey.

A few days ago, I had another treatment.  They told me I only have 3 more to go (yay!).  As I'm sitting there hooked up to the IV poll, I look around and get a lump in my throat.  I'm the youngest person on chemo-row (the treatment room is set up with probably 25 recliners all in a row) by about 30 years.  The woman next to me is struggling.  She has a walker and hooked up to an IV poll.  Her obvious wig is all askew. She is trying to get the attention of one of the very busy nurses to help her make her way to the bathroom.  (I so badly want to help, but I'm plugged in and hooked up to my own IV poll, so I know I will just be in the way.)  She appears to be confused.  She's at treatment alone. It's absolutely heartbreaking. 

Another gentleman on chemo-row is getting treatment for a brain tumor. I overheard one of the chemos he is taking and I know it's going to be a rough couple of days for him. His wife says he's been battling this brain tumor for 15 years. 

Another woman, who is in a local Facebook group for women with breast cancer, is struggling.  She says the doctors tell her there is nothing left to do.  How do you wrap your head around that?  Do you admit defeat and vow to enjoy what time you have left? Or, do you keep on fighting, praying for a miracle, even if that means you spend precious hours on chemo-row and recovering from the assault chemo does to your body.  The quality of life for these individuals appear to be dwindling and where are they spending their time?  Getting treatment or worrying about this God awful disease.  

I know of another local mother who has young children.  Her breast cancer metastasized to her brain. How do you explain that to young children? Or even your husband who has to consider what life would be like without you?  You can cut off your breast, but not your brain.  That is a whole new level of Survivor.    

As the tears started to fall, my nurse came over. (God bless cancer nurses! All of mine have been amazing!) She looked into my eyes, handed me a tissue and held my hand.  Tears started to flow even harder.  All I can muster up through my tears and sniffles is "It isn't fair." She could see exactly what I saw and didn't need me to explain.  

I feel so out of place.  I think to myself "I don't belong here" but then I remember I DO belong here. I'm sitting on chemo-row, getting the same kinds of treatment these folks are.    I'm no different from them.  That is a scary thought! We are all trying to be Survivors, some of them are just having to fight harder than I've had to.

And that's where the guilt creeps in. When I leave, my plan is to get home and run, I can literally skip out of there if I want (and I just may after my last treatment).  The folks sitting next to me literally struggle to walk 10 feet to the bathroom.  My fight is almost done. His fight has lasted 15 years and no end in site. Who knows who will help her when she is feeling sick and exhausted from her treatment.  At times, I feel on top of the world, and then there are times where I feel so guilty for being spared with a treatable cancer that was caught relatively early.  

It's All in the Family

Damn it.

Once my sister tested BRCA+, my mom got on the phone and reached out to a lot of family.  She wanted to let them know about the gene and their possible risks.  We were all aware that ovarian cancer preyed on women in our family; now, we were able to put a name to it: BRCA+.

Of course, it's not a given that every person in the family is BRCA+.

Here are some stats:

• Everyone has a BRCA gene.  This genes function is to suppress tumors.  If you have a mutated BRCA gene then your chance of suppressing certain tumors is reduced (hence the increased risk of breast, ovarian, and pancreatic cancers). 
• Because of my twin sister Jill, we knew my mom had to be BRCA(mutation)+.  The mutation doesn't 'skip' generations; It must come from a direct lineage.  From this information, we can also assume my maternal grandmother (she died in her early 40's from ovarian cancer) carried the mutation.  And likely, her mother, who also died of ovarian cancer.    
• Given that Jill and I are identical and have the same genes, I too am BRCA+.  If we were fraternal twins, it would have been a 50-50 chance.  
• My brother has a 50% chance of carrying the mutation.  I'm no geneticist, just ask my high school science teacher Mr. Devore).  The BRCA1 mutation is located on chromosome 17.  It depends which gene Josh inherited.  If he inherited Dad's normal BRCA gene, he is not a carrier.  If he inherited Mom's mutated BRCA gene, then he is a carrier.  
• My son has a 50% chance of carrying the mutation.  Again, if he inherited the gene from me, he is at risk, if he inherited the gene from his dad, Mason (and any offspring) will be in the clear. 
• As a reminder, both men and women can carry the BRCA mutation.  Due to the increased risk of breast and ovarian cancers, it affects women more, however men can definitely be carriers, and affected with increased risk of pancreatic and prostate cancers. 

I was so hoping other women on my mom's side of the family would be spared being BRCA+.  My cousin, Amy (who used to spend hours babysitting me and braiding my long, tangled hair until her fingers were numb) recently took the test.  Her dad (Mom's brother, my uncle) had a 50% chance of having the gene.  If he is positive, then Amy, too, has a 50% chance of having it.  Decent odds of her not having it, right (Note, I'm also no math wiz).  Unfortunately, Amy found out she, too, has the mutated gene.  Just an example of how this gene can definitely be passed down through the male side of the family.  In her words, "that gene is a strong son of a bitch." Nicely, and accurately stated, Amy.  

Amy has some big decisions to make.  There is not set path that you must follow.  And while that is a blessing, it's also a curse.  Since Amy is a Canote, decisions don't necessarily come easily (Grandpa Canote was a notorious worrier).  But, the Canote's are also strong, so I know she's going to be just fine.  Along with being a worrier, Grandpa Canote was also an extremely faithful man.  No doubt he is looking out for us (and probably worried if there is worry in Heaven, which isn't likely) on the other side.  

Love you, Amy.  Can't wait for my hair to be long enough for you to braid again, just for old times sake.  

An Update

Sorry not sorry, I've been horrible at updating my blog this summer.  Honestly, I've just been busy.  Busy at the pool.  Busy running.  Busy in Florida.  Busy going on sno-cone runs with Mason.  I've been busy LIVING and LOVING life.

I'm feeling fantastic.  I still am getting treatments at the cancer center every three weeks, but other than those few hours, and when I put on my swimsuit to see my forever perky boobs I don't think about cancer much.  I didn't realize how much my thoughts were consumed with it until I started feeling better.  Goodness, worrying was basically a full time job.  Proud to say I'm in 'retirement' at least as far as the cancer worrying is concerned.  Feeling blessed!

Oh, and I am loving my little pixie cut!  My husband has always preferred long hair, but I'm thinking I may keep the pixie cut awhile... It's SO easy and I actually get a lot of compliments on it.  And, admittedly a couple of stares when my sister and I were walking down the beach hand in hand.  Let's just say, we no longer were easily identified as sisters...

We took a family trip to Florida and enjoyed a week at the beach with my husband's entire family.  Mase had a blast playing with his cousins.  Thanks Nannie and Poppy Snyder!  

This smile!   

As you can see, the kids didn't like the beach one bit.   

The required family photo on the beach in front of a sunset.  Richard was putting up a bit of a fight, but I pulled the cancer card and he finally submitted. 

This picture makes me smile, big! 

We've spent many hours at the pool with friends this summer. 

These kids ~ We are so blessed with wonderful friends here.  Our kids don't just play together, but our families genuinely care about each other.  Our village here in Lake Ozark is absolutely amazing.  

My friend Kristan went to a treatment with me.  My cheeks hurt from laughing so much that day. 

We told Mason to get dressed and we would go get a son-cone.  He came out in this.  He even kept the mask on as he was eating his sno-cone.  Goodness, I love this kid!  

A Year Ago

My parents had encouraged us to be proactive regarding monitoring our risk of ovarian cancer; We weren't concerned with breast cancer, it didn't run in our family.  Dad, a physician, always said we should have our families early and take care of business (which meant consider a hysterectomy once we didn't need our uterus anymore).  Mom had wanted us to get an expensive genetic test done for years.  She knew all too well the wrecking ball cancer brought upon a family.  She was just 8 when cancer took her mother.  My sister and I, feeling young, healthy and invincible, thought they were crazy.  But, to get them off our backs, Jill decided to take the BRCA genetic test.  I figured since we were twins, I'd just save myself the trouble and go with her results (yes, I know how genetics works, but at the time it seemed like sound logic).

It was year ago, I got a call from my sister.  Her voice was shaky.  She stuttered.  "Um, Julie.  We... we... we have that gene."  I took a deep breath and tried to make sense of it all.  We were healthy (so I thought) and this didn't change that.  We didn't have to do anything.  But, we definitely had some decisions to consider.

Waiting for my results was the longest month of my life.  Yes, I knew we were twins, so I knew my chance of having the BRCA gene was at least 50%.  I loved being a twin, and I would have been slightly heartbroken to find out we were 'less' twin-y if we weren't identical.  I also prayed that I wouldn't have the BRCA gene.  It was a lose, lose situation.  Either way, I'd be heartbroken.

Well, we all know how the story goes...  Thank God my sister took that test.  Without the knowledge of being BRCA+, I would have not found my aggressive cancer near as early as I did.  She saved me (and in a way, she saved my family).

Looking back on this past year, it's undoubtedly been one of the hardest years of my life (admittedly, not the hardest - that award goes to 2007).  I know this will sound crazy, but the past 12 months have been one of the best years of my life.  Yes, you read that right: The year I had cancer was one of the best years of my life.

My family and I fought for my life.  Physically, I endured tests, scans, multiple surgeries, many sleepless nights, hundreds of needle sticks, shots and chemo.  My body was pushed to it's breaking point.  Emotionally, my family faced uncertainty and worry.  We were in constant prayer.

But, we (and when I say we, that includes anyone who has been reading my blog) held strong and we fought together.  That is what matters.  That is what made it one of the best years of my life.  Knowing I wasn't fighting alone.  My family supported me.  My husband was always there for me.  My community prayed and encouraged me.  Our faith grew and carried us through.  Those feelings of support trump all of the yucky stuff.

Thanks to YOU for making the past 12 months one of the best years of my life.

One of the Happiest Places On Earth

My apologies if you get tired of all the Jeep pictures I post...  Truth is that our Jeep is one of my happiest places on Earth.  It reminds me of when Richard and I were dating.  We fell in love on country back roads, just cruising around with the top down, sipping on Starbucks, and belting out some of our favorite songs.

I remember being pregnant with Mason and imagining family Jeep rides, just as my family did when we were kids.

I remember this winter, driving to chemo, when Richard and I decided to trade the Tahoe in for yet another Jeep because we realized life was just too short to not make memories.  Yes, the Tahoe was extremely comfortable, but Jeeps are where memories made.  It took all of one day for Richard to make the switch (as you can see, I really had to twist his arm!! HA!).

And yesterday, as we celebrated Father's Day, I loved feeling the wind in my hair, the sun on my head, our kiddo laughing in the back and seeing my handsome husband lead our family down gravel roads, taking in the moment.  We still fall in love on our Jeep rides.  In love with each other.  In love with our family.  And in love with the life we have been given.

One Step Forward, One Step Back

*Disclaimer* I'm writing this post with full intentions of publishing it in a few days. So by the time any of you read this, it will be old news to me.  I say that because I don't at all want people worrying about me.  I fully believe I am fine, I'll just feel better when the doctors believe the same thing.

6-17-15
So recently a few friends and I have talked about doing a half-marathon.  There is even one on my cancer-versary that we talked about signing up for.  As I was sitting in the waiting room for a follow-up appointment, my friends sent me a text saying there was a discount code available if you signed up for the race today so naturally in all my excitement to save $7.50, I stupidly naively signed up for the Waddell & Reed Kansas City Half Marathon, forgetting that I will actually have to complete 13.1 miles.  Well played Waddell & Reed, this girl loves a bargain and fell right into your trap!  Yes, I got so excited about saving $7.50 that I took the plunge to sign up for a half marathon I am no where near prepared for!

As I was feeling a little nauseous/excited about signing up for this race, I over confidently thought to myself "I'm going to show cancer that she's messed with the wrong lady!  I WIN!" I could feel my swagger coming back.  One step forward in me taking back my life.  

Literally one minute later, my breast surgeon walks in the room.  We do our nice greetings and I take my top off for him (that's how we roll).  He feels around a little bit and becomes concern over a mass.  I had assumed it was nothing, just part of the healing process, but he isn't quite so sure.  I think he's feeling this mass for awhile (admittedly, since I have zero feeling in my breast, I can't say for how long or how aggressively he was feeling around there).  I usually shut my eyes during the exam, you know to keep it less awkward.  He recommends I go for an ultrasound.  

The office folks at both my surgeon's office and the Cox Breast Center bend over backwards to get me in the same day.  I intended this to be a quick 10 minute appointment, and it just turned into a one hour appointment.  No biggie.  Right?

I waited a bit to get called back by the ultrasound tech.  I didn't mind, the waiting area had several tables with jigsaw puzzles on them.  I love puzzles!  (What a genius idea to keep women busy instead of sitting there worried - nice job Cox Breast Center!).  After a 30 minute ultrasound and some chit chat with the tech, she tells me the doctor will review my images and she'll be back shortly.  

2 hours later: I wait.  And then the tech comes back and says the doctor wants to see a mammogram of the mass.  I didn't know you could mammogram an implant, but it turns out you can.  At this point I start to get worried.  What is on that ultrasound that is so worrisome that warrants them risking breaking my new boob?

After the ultrasound, and the mammogram I finally meet with the doctor for yet another ultrasound.  She says something doesn't look right.  She explains that when they do ultrasounds they can often confidently say it's nothing or confidently say it's cancer and in my case she couldn't confidently tell me either way.  

My thoughts: Shit! What do you mean something doesn't look right?  I just signed up for this race.  What if I can't do my race?  Oh my God!  What the f$@# is happening right now?  Am I going to die? It's cancer.  No! It's nothing.  They are just being careful because they don't want to get sued.  I know how this works.  Stop playing games!  I won't sue!  Just tell me what is going on! Oh gosh, Richard has been with Mason in the car for a long time.  They both are probably going crazy.  What if one of them needs to poop?  Can we just hurry this up, please?

3 and a half hours later: The doctor suggests a biopsy is in order.  Or we can just wait and see and I can come back in a few weeks.  F that!  We need to figure this thing out like yesterday.  Luckily, they worked me in for a needle core biopsy... She took 3 samples with this thing that makes a loud, startling clicking noise (sort of like one of Mason's toy guns).  One step back.

And now we wait... Again...  

I'm 94% confident this isn't a big deal.  Perhaps some necrosis (which sounds really bad, but I don't think it's a huge deal) and the other 6% of me is scared shitless.  I've had that "it's not a big deal" feeling before... And I couldn't have been more wrong.  

On the bright side, after we returned home, my friends had left bags of Oreos on my counter to do an Oreo taste test.  They know me SO well!

UPDATE
6-21-15  Richard and I handled the stress of waiting for the results really well this weekend.  Until 9:30 when he went to the bathroom and I went to bed.  We both secretly started looking up information on Google.  Goodness, that's one way to get yourself whipped up into a frenzy fast!  I told Richard that I could handle another surgery.  But that another round of chemo would be devastating.  And the thought of starting all over when we had just arrived at the point where we could see the light at the end of the tunnel felt like too much.  We prayed.  And vowed to stop looking at Google for the night.

At 10:42pm, my phone rang.  It was Dr. Buchner.  Seeing his name come up on my phone brought back a flood of memories the last time I saw his name on my phone.  He said the mass was benign - no cancer!  He also said a bunch of other stuff that I didn't catch because I heard the words we so desperately needed to hear!  What an incredible blessing!

Also a blessing is that I have a surgeon who saw the results at 10:45pm, after a long day, and took the time to call me, knowing I was probably on pins and needles waiting for the outcome.