A Quick Look Back

Not the best picture of me, but it was actually a great memory...

A year ago today, we checked into the hospital for what we thought was a prophylactic mastectomy.  Little did I know this would be the start to a hard, life changing year.

Richard always has a way of making me laugh when I am stressed.  Here, we are nervously waiting to get called back into surgery.  This is a picture he sent out with the caption "Bye everyone, we are at the airport headed to Cancun!"  Oh, I only wish!  

Honey, I'm still waiting for that trip to Cancun! 

My Feelings About Pink

It's October.  In case you are blind or live in a cave (which would make reading a blog difficult) there is pink everywhere for breast cancer awareness month.  Pink cereal, t-shirts, water bottles, panties, mens boxers, NFL referee whistles.  There are cute, clever saying: Save the Tata's, Saving Second Base, Check Your Rack, Save the Girls, etc.  Breast cancer awareness feels incredible trendy and a great excuse to talk about boobs.  The merchandise is cute, pink, girlie, sparkly.  And I love that awareness is being brought to the cause.

I'm reminded of when I had my mastectomy, Richard showed up wearing a pink t-shirt.  I hadn't been diagnosed with cancer yet, but I remember laying in the hospital and seeing him walk in wearing that bright pink shirt.  He looked incredibly handsome.  It was his way of supporting the difficult decision I made to mutilate my body protect myself.

With that said, I have a bone to pick with all the pink.  Cancer is a bitch.  It's not all pink/sparkly/funny.  I suspect the nice, pink message is helpful because if they showed what breast cancer really looked like it would scare people.  It's lonely.  It mutilates your body.  Weeks after surgery, you literally have tubes hanging off of you like tentacles that collect blood, puss, and something stringy (I never did figure out what that was).  If you are lucky enough to keep your nipples, they turn black.  You new boobs, look perky on the outside, but there are scars and they are constantly cold (there is no body fat or tissue to keep them warm).  Chemo is ridiculously harsh: mouth sores, sweating, diarrhea, thrush, vomiting, nose bleeds, incontinence (that's when you shit yourself), weight gain, nails falling off.  I was lucky enough to not have to have radiation, but I know with that can come serious burns.  Those are just the physical effects of cancer, which are actually much better compared to the emotional and mental effects of cancer.  None of it is a pretty picture ~ and it certainly can't be wrapped up and tied with a pretty pink bow.

Again, I don't at all mean to discount the awareness that all the pink brings.  I love that women are encouraged to do self breast exams and mobile mammography units are parked outside of workplaces.  However, the cynical part of me, wonders how much does do pink merchandise sales actually go towards breast cancer prevention/treatment and how much of it is a marketing ploy to get you to buy something pink so you feel good, thinking you are helping a cause, when in actuality you are just getting duped into buying a pink trinket that you really don't need.  While I am absolutely sure the intentions started out very pure, it irritates me that some companies are likely using pink to promote their supposed support of breast cancer as a cover up to just get you to buy more stuff.

Signed,

Cynical Julie

Note to Self: Get Your Funny Back

I've not been sleeping well.  I'm not sure what is causing my restlessness.  Perhaps its that once I do fall asleep, I wake up 2 hours later and feel the need to make myself a full blown meal (it's called entitlement eating).  Or that our 5 year old, who used to always sleep in his own bed, has started sleeping with us (which for the most part I love) or that before bed my husband takes both of the good pillows for himself.  Any who, I couldn't sleep and started rereading my blog from the start.  A few thoughts:
1.  It's been a hell of a year.
2.  I've forgotten a lot of the stuff I've written about.  Sure there are those things that stick with you, like the time I shit myself after chemo, but I've forgotten a lot of it.  Glad I have it documented (mostly).
3.  I used to be funny...  Note to self: Get your funny back, Julie!

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!