Friday, January 18, 2019

Welcome to Club Met: Metastatic Breast Cancer


So you may have heard by now, after eight and a half years cancer free, I'm back in the game.  My newest joke is 'I've always wanted to go to Club Med, not Club Met.'  WTH? But seriously folks, is it too early to say cancer freaking sucks.

Club Med be like:


Club Met be like:
My refrigerator is GE too 😜

As a reminder, or for those of you who are newbies to my blog, here's some background for you. Just an FYI, not all the photos and videos and such are visible on your mobile device.  Sometimes you need to read on your computer, or go to my blog's FB page @thesacredordinary

I was diagnosed with Stage 3 lobular carcinoma in April of 2010, previously undetected by mammograms.  I had five months of da good shit, neoadjuvant chemo (chemo before surgery).  I affectionately refer to that summer as Cancer Camp, where we make cool crafts out of the hair we are losing and prepare ourselves for the journey to the Kingdom of Lost Breasts.




In October of that year, I had a bilateral (or double) mastectomy.  I named my girls Flopsy and Mopsy, and even though cancer was only found in Flopsy, I decided these two had gone everywhere else together, so they were going to the Kingdom too.  I was supposed to have reconstruction surgery at the same time as the mastectomy, but as luck would have it, my original plastic surgeon was expecting twins and was put on bed rest two weeks prior to my surgery.  It was over four years later that I had reconstruction, and although I had several healing issues, I was blessed to find a new plastic surgeon and received excellent care and new boobies at Stanford.  I didn't get implants; my new boobs were made out of my own tummy skin and fat! Winning!

Last time I was this flat was 5th grade.

I hated these but they did fill out my shirt and made me look like my old self.
Getting my tissue expanders filled, stretching skin for new boobs.
I'm getting ahead of myself here!  A couple months after recovering from the bilateral, I had seven weeks of radiation.  I got street cred folks, having been through the cancer treatment tri-fecta!  

Poison, cut and burn baby burn.



Radiation burns under my left arm and lymph node area
Fast forward eight years later.  Oh how grateful I was to have that bitch behind me!  Oh what I would have missed if cancer had its way with me in those early days.  My sons were only 19 and 12 at the time.  In the years since I was blessed to see the oldest graduate with a cinema degree, and have his senior thesis film presented at the Sacramento International Film Festival.  I was blessed to see him continue touring and performing and aging out of the World Champion Concord Blue Devils drum and bugle corp.  I was thrilled when right out of college, he was hired at Sony Playstation!

I was blessed to see my youngest son as the Drum Major for his high school during his Senior year, and was right there at his high school graduation.  I was proud to see him perform a year as a Blue Devil percussionist; he still teaches percussion at his former High School and Middle School. He is a paid audio book voice over actor, and has his own live stream on Twitch.tv, where people come to watch him play video games and listen to his awesome hilarious commentary.  He's finishing up at community college and has applications in and waiting to hear!

Oh what I would have missed if cancer had its way with me back in 2010!  I remember in the early days of my diagnosis the typical "why me God why me..." Now though, looking back at all the love and support and angels that arrived, I wouldn't give it back. Cray cray I know but that's my testimony.

I ain't gonna lie, finding out the cancer was back was a big blow, damn, but I am faithful that God will use this test to once again write my new testimony of His faithfulness.  After my initial diagnosis, I started this blog.  I blogged daily all through treatment, had many followers all over the world, and came to know my 'Sisters' (and a couple Brothers) in the trenches.  Many of whom I've kept in touch with over these years.  Well, I'm back here at the keyboard again, I guess there is more for me to say and learn and educate about living with cancer.  God has more for me to do.  They always say God will never give you more than you can handle so evidently he thinks I'm a boss!

Frequently Asked Questions:

Does Stage 4 cancer mean I've received a terminal diagnosis.   I'd like to start with what exactly does Stage 4 mean?  Well, there ain't no stage 5 folks.  Where is the dang suffering emoji on blogger... Oh here it is 😩 Just today when chatting with my nephew again about everything, he was commenting how it really is sobering.  I told him 'Thank goodness I work at a winery!' 🍷 We laughed hard. That's one of the things I learned in my first go round in cancer camp.  You have to LAUGH louder than the CRYING.  If you are a sensitive type, be prepared, these posts will be filled with some dark morbid raw humor, cause that's one of the ways I get through this shit.  Laughing in the face of cancer! Take that you ruthless Bitch!  Ok rant over, where was I...

Stage 4 breast cancer, aka metastatic or secondary cancer, is when the cancer has spread from it's original location to distant places in the body.  Some people are diagnosed right out of the gate with late stage cancer.  When I was diagnosed it was with a fairly rare form of breast cancer, invasive lobular carcinoma.  Only makes up about 10% of breast cancer cases.  I was hormone receptor positive, and Her2 negative.  What does that mean?  It basically means that my breast cancer can use estrogen as fuel.  I was considered Stage 3B because I had a fairly large tumor, and it had spread to a few of the lymph nodes on the same side. After treatment, I was considered "cancer free." After five years, I really considered myself a "survivor." Go Jesus!

Now a days I consider myself a breast cancer warrior.  In fact I'll be posting about why I think the 5 year milestone needs to be abandoned in my type of cancer.  I'm fighting it again, it's in my bones.  In another post, I'll explain a little more about how it was detected. This post I'm just going to focus on helping you understand what Stage 4 means and how I'm coping with that. After my original diagnosis, the treatment was aimed at hopefully providing a "cure." This time around, the treatment is aimed at delaying disease progression as long as possible.  Doesn't take much to connect the dots to understand what I'm facing here.  There is a likely possibility that this will eventually be the cause of my death.

This is how I choose to look at it.  This is very important dear Reader so lean in.  The truth is we are all Stage 4.  Let me say that again.  We are all Stage 4.  Ain't nobody getting out of here alive.  There are plenty of folks, through the random and chaotic nature of this life, who will die before me.  I've always known I will die, it just may be a lot sooner than what I was planning on. As my Pastor often says 'Nothing is promised to any of us' and 'Life is full of swift transition.' I plan on riding this thing called my sacred ordinary life until the wheels come off, the engine is smoking, and I head over the cliff, straight into the arms of my Savior Jesus Christ, and all the folks I love who are already there waiting for me.  The truth is we are all Stage 4 in this earthly life.  Some of us though know where we are going after.  I plan on carpe-ing the hell out of every diem, but I also know each new day brings me closer to seeing the ones I've loved and lost and miss terribly.  Some of my favoritest people are in Heaven.

What is the overall survival rate of metastatic breast cancer that has spread to bone?  Well from what I can tell worse case scenario is about two years, best case scenario I'm going for is COMPLETE REMISSION. I'm claiming it, get behind me Satan, and until God notifies me otherwise.

Will I be in "chemo" again"?  Yup, already back in cancer camp.  This time though I don't have a port and not receiving chemo infusions.  This latest greatest I'm on is in pill form.  For my particular type of cancer, which I'll discuss more in a later post, I'm on an aromatase inhibitor or AI (drug name exemestane) and another drug called Ibrance.  The AI is basically an estrogen blocker, so that hopefully my cancer his little sources of fuel.  Ibrance is a fairly brand new breast cancer fighter, approved by the FDA in March 2017.  You may have seen the commercials for Ibrance and Verzenio; both are FDA approved drugs for metastatic hormone positive breast cancer.  Ibrance is a targeted therapy used in conjunction with the AI.  It's known as a CDK 4/6 inhibitor.  What does that mean?  Basically it affects the cycle of cell growth.  The good news is it can help slow the progression of cancer, but it also has serious side effects on all my good cells too.  Yikes.





How long will I be on these drugs or in chemo?  Until something new comes along, or I die.

What are the common side effects with these drugs?  For the AI exemestane, common side effects are: hot flashes, headache, hair loss, joint/bone/muscle pain, tiredness, anxiety, nausea, dizziness, depression, insomnia.  Yay!

For Ibrance, common side effects are:  low white blood cell counts which can lead to serious infections and even death.  Low red blood cell counts and low platelets.  Common side effects from Ibrance are infections, tiredness, nausea, sore mouth, abnormalities in liver blood tests, diarrhea, hair thinning or hair loss, vomiting, rash, and loss of appetite. Oh goody!

Are you going to lose all your hair again like you did the first time? I'm hoping to just have some mild hair loss or thinning.  Two weeks in, I've already noticed a little more than usual on my hairbrush, but so far nothing alarming.

Summer of 2010, Deb 1 Cancer 0

Are you scared?  Don't get me wrong, cancer sucks, and I'm not happy to be here again, with the stakes even higher.  Despite all that, I feel remarkably peaceful and happy.  It's still rather shocking to be labeled Stage 4, but I am a very blessed lucky girl, and my faith received a huge booster shot after my last cancer battle.  I was in a very good place when I received this secondary diagnosis: my husband and kids doing well, a new job for me, escaping server life and loving the winery life.

Are you still working? I took a couple months off work as I was going through the gauntlet of tests to get to diagnosis, including a bit of time to process/accept the news, and start the new drugs.  I am recently back to work and hoping to continue part time as long as I can.  I love my new job I've been at since last Spring.  It's just awesome, great bosses and coworkers, and come on, working at a winery in the beautiful Napa Valley?  Lucky girl!  Dat's me!

Hosting a wine and cheese pairing with winery tour at my job.   
Was breast cancer in your family? Your Mom died of cancer, right? No history of breast cancer in my family.  Did you know that only 5-10% of breast cancer is genetic?  That means at least 80-90% of us get diagnosed with no family history.  My Mom died from cancer at only 46 years old.  My Mama though died of renal cell or kidney cancer.  Although she never smoked, she was a musician during a time when smoky clubs and bars were normal.  Most likely my Mother's cancer was second hand smoke related.

Mommy and me on my wedding day, 10/25/86

Well my Dear Reader, there is lots more to tell you in these coming days and months, and I will be posting not only about treatment, but also taking you along as a witness to all the good I know is coming for me!  I hope you'll join me, comment, ask questions, and of course, prayers and love and good mojo are needed and welcome.  To my beloved Sisters who I met through this blog on the last go round, it is really hard telling you this news.  I know when one of us goes down, it really hurts all of us.  There there now Sis, I got you, I know you got me.

Here is the world.
Beautiful and terrible things will happen.
Don't be afraid.  Frederick Buchner

I promise in this Flopsy and Mopsy the Sequel, I will tell you about the beautiful things too.  They are still happening for me every day.

I am not afraid.
I am blessed.
I am grateful.
I am one tough cookie.
Jesus at the wheel.

Writergirldreams.

That's me.


Vallejo Relay for Life, Hero of Hope 2012

If you have a question, comment here, or you can find me on Twitter @Writergirldrmz or my blog page on FB @thesacredordinary


Saturday, January 5, 2019

Faith

Can you see it? Nestled in the sticks and the mud and then, there it is. Sometimes hard to find. Sometimes you must close your eyes to see it. Faith. Faith. On a walk with my son over eight years ago I made this little sign for myself, as he played on a tree swing tied to a tower of eucalyptus. I was in cancer camp at the time, and needed a reminder that I am the daughter of a King. That I am loved and favored. That He would pull me up out of the muck and the mire and plant my feet on solid rock.

It’s been almost nine years since I battled Stage 3 breast cancer but oh the legion of angels He sent me. Oh the blessings that rained on my life. In the early days of my diagnosis I cried out ‘why me Lord why me...’ Looking back now, I would not give it back. In my sickest darkest days faith was renewed, a marriage restored, strength and peace found in surrender to His Word and mercy. On this last day of this year, I am picking up my sword again, straightening my crown, gearing up for battle, and keeping my eyes on the hills from where my help will come. I’m part of a new and privileged club now; evidently just being a VIP member of the Sisterhood of Cancerous Breasts was not enough.

 There is more for me to do and say and learn and educate, as I’ve been recently diagnosed with metastatic breast cancer aka Stage 4. ‘It’s in me bones’ she says ‘aaaargh’ like a Pirate. There ain’t no Stage 5 folks so I’ll be picking up my pen again, blogging again on this new journey, telling you about my sacred ordinary wherever it takes me. I always wanted to go to Club Med, not Club Met! Come with me dear Reader. I’ll need your company. And love. And prayers. Saying goodbye to 2018. Let’s do this 2019. I’m ready. Writergirldreams. That’s me.


 #breastcancersucks #jesusheals #metastaticbreastcancer #clubmet #mbc #thesacredordinary #blogger #faith #invasivelobularcarcinoma #lobmob #jesusatthewheel #breastcancerwarrior


Related Posts Plugin for WordPress, Blogger...