High Tolerance

I’m watching as friends on Facebook have kids.

I catch myself scrolling more quickly when I see pictures, announcements, milestones – it’s a double edged sword.

One side cuts me when I feel what I’m missing.

The other side cuts me when I realize that I’m not a good enough person to put myself aside to be happy for them.

Realizing that you aren’t a good person can be humiliating, but also life-affirming somehow. Acknowledging this thought makes me feel like I'm being authentic to me - but still...not a good person.

Watching other people have these experiences makes me think of the continuous downgrading of the silver lining that I’ve been finding the last 4 years.

At first diagnosis, I wasn’t informed enough to be grateful because I didn’t know how bad things could get.

It’s funny now because then I was sad thinking that -post-mastectomy- I wouldn’t be able to breast feed. That’s no longer relevant.

Cancer started as a blip on the screen of my life – that was the original silver lining.

Getting over a hump to the other side – that’s a pretty good goal. 

Years have fallen off and now, my tolerance for bad things seems to have increased.

When I was leaving work for my biopsy in September of 2013, a colleague told me that it was probably a cyst filled with fluid that they would aspirate. 

“OMGGGG…that’s so gross! Where does the fluid go?” 

That was literally the worst thing I could think of at that moment. Four years later, I’ve experienced way grosser things….bone biopsies, a double mastectomy, drains, radiation burns, Faslodex shots (honestly…way grosser than they seem), going through menopause at 28 – it’s not pretty.

What holds it together is the stark realization that it can be worse…and that, for me, it will get worse someday.

This thought leaves me grasping at positivity straws everyday:

I still have my hair

I still have my mind

I can still walk, move, work, drive

I have my life, my family, my friends

I have the power of appearing normal

I want more than this – I want what I presumably could have had, but at the same time, I could not ask for more.

Surprise...

Somedays, when everything seems normal, I forget.

It's different from my daily, regular, forgetfulness.

On those special days, I go to work, I have a normal day, I laugh with coworkers (I'm super funny), I come home for dinner with my husband, and life is good.

It's not until I go upstairs and hop in the shower that it happens. I see myself in the mirror - I only have one boob.

I know that I should know by now, but I don't. The flat side of my chest - the horizontal scar - they remind me.

Planning Passion

A few months ago, I shared on Facebook that I'd contributed to the Kickstarter for Passion Planner in order to get a Passion Planner. I was so excited. If you don't know how Kickstarter works for products, you can pledge a certain amount towards a project and if it is funded, you can get one of the items (depending on the amount you pledged).

As soon as I got the email that it was funded, I felt anxious. I don't know what my passion is anymore. I scanned the PDF version of the planner and to my dismay, in order to use it, you need to identify the passion as your goal. I was hoping it might help me identify it...

I received the planner today, and instead of being excited, I felt sad and depressed. I wrote previously about going so far to preserve the mundane that I've lost sight of the big picture. I don't know what to do. I don't know how to use this thing.

Here is part of the problem:

Long Term Plans With Metastatic Breast Cancer:

1 hour in advance: Absolutely! Go for it!

1 day in advance: Great! Knock yourself out!

1 week in advance: Sure - you do you boo!

1 month in advance: Okay! But only if you don't have a scan.

3 months in advance: Gurl, you will definitely have a scan in this time, so don't book any flights...

6 months in advance: Maybe. Just maybe.

1 year in advance: Dream on gf!

5 years in advance: LOL.

So what am I supposed to do? 

What will my legacy be? What will I be remembered for? 

Before cancer, it was easy. I'd work, take care of my husband, and have kids. I'd take care of the kids and It would be awesome! My kids could be my legacy. 

Now I see how lame that is, I know it might not happen, and I have no ideas. 

Sometimes, it's hard enough to do the minimum to survive everyday.

I wish I had a solution - some sort of epic realization - to finish up this post, but I don't.

I'm not Pink...I'm Brown

I have the cancer, but the cancer doesn't have me - and this cancer is not pink, these scars aren't pink - they are brown.

Being newly diagnosed with breast cancer in the month of October was a torturous experience. I would liken it to an electric fence that shocks you when you touch it.  But the fence is everywhere...and it's invisible... AND it can sneak up on you at any time. 

Breast Cancer Awareness Month - something that is intended to be supportive and comforting can actually be a sad reminder that your life has changed in many ways that you cannot and will not ever recover. 

Even now, my third October living with breast cancer, the commercials, ads, Facebook posts...they wear on you. I have been lucky to have found it easy to recignize the positive intentions. It's always easy to appreciate the gesture, even if I'm not a fan of the manifestation.

1) Donate to an organization that has less overhead and truly funds breast cancer research (I wouldn't be mad if it was an organization focused on Metastatic Breast Cancer...). Or...donate to a smaller, more local organization, maybe one that provides financial and other support to patients in your area.

2) Don't pink for the sake of pinking. Just because there is a pink ribbon on an item, doesn't mean you need it. If you were going to buy it anyway, that's awesome, but there is no need to go out of your way! The item's purchase results in a small donation, if it's something you were not going to get anyway, why not donate the cost of the item?

3) Make awesome things happen on a micro level. If you want to do something for those living with breast cancer, why not start with people in your life, social circle, or community? Do something nice or helpful for that person. I'm a huge fan of small gestures and they make a difference - having been on the receiving end of many kind gestures in the last few years, I can assure you - it helps.

Not That Bad; Definitely Not Good

It's so much easier to share good news than it is to share bad news. Even if it is just slightly bad. Telling others makes it real-er than it was when it was just information rolling around in your head.

I got my PET scan results back and it wasn't good. It wasn't terrible, but it wasn't good. Having metastatic breast cancer creates a lot of roller coaster-like days...weeks...months...and being that I'm already inclined to being a dramatic, emphatic person...the roller coaster is definitely the kind with more serious height restrictions.

My PET scan showed spread and growth to more bones. I have to be grateful that I've dodged involvement by my vital organs, but that is still really hard. The doctor called me the Wednesday after my scan and gave me the news and I got a full report last Friday. That little spot in my right shoulder lit up (it had lit up before), I have new spots in a thoracic vertebrae, a tailbone, my pubic bone...and huge holes in mah swag. Seriously, not feelin' myself lately.

It's a huge sense of failure, it's impossible to not wonder if there was something I did or didn't do - was there something within my control that could have prevented the progression? Logically, I know there is not. In addition to the feeling of loss I feel for everything else, there's a sense of loss as I lose this one course of treatment and an option slips through my fingers.

My treatment is changing so it's on to the next. I can't start right away, because the treatment is for post menopausal women (which I am...thanks to DRUGS), but because of my age, they are appealing to the insurance company for me. Still no chemo, so I can be grateful for that.

CYBER🔪: Day 2

Yesterday was my second Cyberknife session. Two naps down...one to go. I spent most of last night laying down and throwing up water. 

It's not the most fun I've had...

...doing much better this morning. Just nausea. I really didn't want the anti-nausea meds the doctor offered so I've been hitting the ginger pretty hard. For the record, fresh ginger has been way better than the chews and stuff. But that makes sense, right?

Today I took off from work and will be kindly chauffeured to the hospital, I thank the universe for kind friends. 

I believe that the symptoms build and may get a little worse before they are better..

...the important thing is that today will be my last radiation session!

Cyber🔪

Well, I started Cyberknife today...three concentrated, one hour sessions of radiation that are supposed to be super precise.

Very high tech...

...I asked the therapist if I could sleep. She said that would be perfect. 

That...in case you were wondering...is the right answer. 

Besides, I was going to fall asleep as soon as I laid down anyway.

I returned to work after the hour long session. Now I am home, not feeling so hot. Nauseous, lower back pain, and super tired. I can't tell what's a side effect and what is not! Here is to me feeling better tomorrow and finding out that it was a fluke!

In cooler, happier news...the Hello Kitty balloon that a friend brought to the hospital when I had surgery is STILL FLOATING! She began her descent last week...and it super close to the ground...but she is STILL UP!

The top photo is Hello Kitty in November 2014, at City of Hope. Bottom left is Hello Kitty in January 2015, bottom right is Hello Kitty in February 2015, after I finished radiation to my chest. Here she is today...

She may be on the ground, but she is STILL KICKING! I was hoping she would make it through radiation...and she might. Hello Kitty is a survivor...she's not gonna give up...she's not gonna stop...

...SHE'S GONNA WORK HARDER.