Posted in Autism

I’m Still Here & You’re Invited!

April 2017

Friends & Family –

Wow – it’s been a heck of a week!  No, I’m not referring to Barry Manilow’s shocking news regarding his sexual orientation, nor my having reached the big 5-0.  Let’s be real – having cancer makes turning 50 a piece of cake!

Will you bear with me for a moment as I oust some ugliness?  I promise this won’t be gross for long, and frankly, may be the weirdest, most long winded, and ridiculous party invitation you’ve had in a while, but it comes from the heart, I promise.

For the last month, I’ve felt unsettled and edgy.  Getting diagnosed with breast cancer seriously stunned me – throw in surgeries, treatments, hormone meds, etc. and it may not surprise you to hear that it was a rough year.

March 8, 2016 was the date I was diagnosed with breast cancer last year.  April 6th was the date I had surgery and learned that it was far larger than imaging indicated (10 cm mixed lobular/ductal tumor) and had spread to my lymph nodes changing my preliminary stage 1 diagnosis to stage 3.  This was a terrifying day and one that’s been hard to navigate this week despite distracting myself with routine craziness, my sister’s lost cat (a guy cat named Creampuff – don’t ask), my 50th birthday and of course, Barry’s news.  No matter what – I can’t help thinking about the debilitating fear and constant bad news that just kept coming and getting more horrifying by the day.

So here’s what’s hard to talk about, and if you skip this part I won’t blame you.  It’s gross – just like everything cancer is gross.  30% of those diagnosed with breast cancer will eventually metastasize and it can happen anytime – sometimes only a few months after treatment, sometimes 15-20 years later.  The randomness of it all is fairly unsettling to me.  Of course, my large tumor and lymph node involvement make my risks of progression higher than most.  That’s really gross.

My type of breast cancer (lobular), doesn’t respond as well to chemotherapy as the most common type of breast cancer (ductal).  This is because it’s usually a slower growing cancer, and chemo targets fast growing cells.  Note – I learned this sometime during chemo, and was not thrilled my oncologist hadn’t mentioned it.  He’s awesome as an oncologist, but we have a tense relationship and he’s looks at me kind of weird when I cry and yell things like “that’s gross” or “I don’t like that news”, etc.  When I confronted him about lower success rates with chemo, he said “lower doesn’t mean unsuccessful” – and I know he’s right, but it’s scary.

Before I had breast cancer, I had no idea what follow-up after treatment entailed.  I had surgery, rock hard expanders (think deflated balloons under the skin but heavy and hard as rocks), chemo, radiation, removal of ovaries (sure, I’ll do surgical menopause in 10 minutes vs. 10 years for the natural kind – holy !@%) and last but not least medicine that kicks the estrogen out of my body and causes joint pain that makes me feel twice my 50 years, BUT (it’s a big but) I have no absolute way of knowing if I am cancer free or not.  I hope my treatment got rid of it all – but I’ve had no imaging or other conclusive tests that tell me I’m cancer free.  Generally speaking, breast cancer patients don’t have regular imaging following treatment – unless you have symptoms.  As you might be realizing, every single time an ache or pain pops up, guess what I’m thinking about?  I’m told this slowly improves over time – the panic of every single thing possibly being cancer in a new place in my body, but at first, it’s emotionally a lot to handle.

Because of the nature of my original tumor, I do have the option of imaging, but my doctor wants to wait until fall.  MRI is the most precise imaging for my weird lobular breast cancer, and until all my plastic surgery is done this summer, I can’t do an MRI because I have metal in my body.

For me, that’s been hard about this week.  I hope it’s gone, but having been betrayed by my own body before, I’m suspicious.  But, going through scans and waiting for results will no doubt bring a new level of stress.  Now that I’ve learned I won’t have scans until fall, and I’ve spilled my guts about being afraid that cancer is lurking, I think it’s time for a topic change.

Here’s the other thing I’ve been thinking about a lot this week.  I’m remembering the moment our tired, stressed out family woke up following an 11-hour-car trip, opened the shades and gazed out at the granite faced mountains of Yosemite National Park (complete with waterfalls) over spring break.  It’s a trip I’d always wanted to take, and we were all so excitedly planning it last year when breast cancer so rudely interrupted.  Standing in front of El Capitan with our trio, shouting “nature” randomly, scaring Henry with fake bear sightings or lines like “could someone ask that bear if he can help us carry the luggage?” are the stuff of lifelong memories.  Seeing Ada G’s excitement over sea otters and seals, and E dipping his toes in the Pacific for the first time – unbelievably cool.  It was incredible, beautiful, stressful, ridiculous and crazy all rolled up into one, and I’ll forever cherish our time away from everything that’s felt so hard this past year.  It was awesome and imperfect, and hopefully, we can add some new parks in the days to come.  Nature!

The other thing I’ve thought a great deal about this week is you.  Because while this past year presented lots of new challenges for our family, we also learned that despite having our fair share of asshat moments, we have some pretty awesome people in our lives.

Heck – when I asked for good vibes – you gave them, in spades!  People from all corners of our lives showed up and gave the very best of themselves again and again, through thick and thin.  In ways big and small, you were there for us when we needed it most, and we humbly thank you.

So, it’s time for us to give back, thank you for the kindness shown to our family, and begin our lifelong mission of giving back and paying it forward.

Also – I’m old, my joints hurt and make me hobble, my hair looks like a chia pet gone wrong and I still have rock hard foobs (until June), but . . .

I’m still here!

So, come and celebrate with us!  For so long, I’ve welcomed you to my red couch here, on my blog.  Now, our family would like to welcome you to our humble little home where you will find the red couch in our driveway – sort of like a welcoming beacon if you will.

The Love Patio in our back yard that so many helped to create will be up and going – the S’mores bucket will be packed full of goods, and weather permitting, we hope to have a bouncy house too!

Because I’m old, we’ll have an 80’s candy corner, Henry is trying to get Pac Mac operational and with any luck – Pong.  We’ll have food, beverages for all ages, and snacks that don’t have a clear theme but are family friendly and hopefully fun.  To top it off – 80’s music (not loud – remember I’m old)!

Ok – I wanted a giant balloon display in the shape of breasts at the end of our driveway, but I’ve relented because someone in the neighborhood dislikes us (remember the grill incident?).

Here are the specifics:

Saturday, April 22nd

Anywhere between 5-10 p.m.  (hello, I’m 50 – I can’t stay up late anymore).

Come for a cocktail on the love patio and stay for the s’mores or depart for some actual fun if you wish, come share some pop rocks with us, walk through my purple Prince bead curtain and yell “nature” just because, come to see if I end up using my foobs as a weapon on my brother-in-law who is determined to be the party dj, or just stop the car and run up to grab a cupcake and some Top the Tator – we welcome/celebrate you all!

Please – no gifts.   I’ve already received the best gift of all – I’m here.  If that’s weird for you – I humbly ask you to help someone else in need when they need it most as you did for me – I happen to know how much it means, and spreading kindness is kind of awesome.  I’m collecting some of the terrific and helpful things I received to gift to my oncology clinic and will have a box out (totally optional – just one way to spread kindness).

So thank you.  Whether I see you the 22nd or not – my gratitude runs deep to one and all.  If you think you can make it – let us know so we’re prepared.  We’ll be the house with the red couch out front!

Love ya, man!

Author:

I'm Kammy - Mom to Elliott (20), Henry (18) and Ada (14). Both Elliott & Ada have autism. I enjoy strong coffee, pretending to run, and writing about our daily triumphs, struggles and light-hearted moments. Oh - and I was diagnosed with stage 3 breast cancer in March 2016. That's gross.

4 thoughts on “I’m Still Here & You’re Invited!

  1. It’s earth day!! We will be at the March for Science during the day and would love to head over for a
    cool one in the evening and most importantly to celebrate your recovery would be
    so awesome!!! You have done everything
    to put the odds in your favor. I have faith
    that you will be cancer free till your a
    Little old lady😁
    PS I get concerned over every growth , spot. skin thickening it scares me. I do think we now are watching and listening to our bodies more and that can only be a good thing!

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  2. As usual your writing allows me to laugh AND cry, but I’m going to try my darndest to get over to your Johnny Cake house and celebrate with you on that Saturday (and bring as many from my wayward troop as I can too!). Love ya, man!

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  3. Hubby is out of town but I will do my darnedest to get over there with at least a few kiddos & hug your neck.
    Love ya, Kammy!

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