Moving along....slowly....

Y’all may hate this weather, but I am personally looking forward to putting on my flannel jammie pants tonight when I get home from work and not taking them off again until I have to get ready for work Monday morning. (Ok, I might shower and put on a clean pair of flannel jammies) I’m gonna snuggle up with a bottle (or 6) of dry red wine and my dogs, a fleece blanket and the remote. And I’m not leaving the house.
I am mentally exhausted this week from all the phone calls and emails and doctor’s visits and research I’ve done this week.
I have learned a lot.
A lot I didn’t really want to know.
The statistics are not great with my new diagnosis.
The median survival rate for metastatic breast cancer is 3 years.
Yes, that number is 3.
36 months.

It takes my breath away and makes me tear up even typing those numbers.
Did y’all know I’m 48? And will be 49 in April.
Cancer doesn’t care.
It doesn’t care how old, I actually prefer young, I am.
Or that I have 3 children.
And a husband.
And family.
And friends.
And a career.
And dogs.
And it wouldn’t care if I was single and childless and petless and friendless.
It doesn’t care that I make a decent living.
And it wouldn’t care if I was rich.
It doesn’t care that I have amazing people in my life and that I know God.

The one thing cancer does best is the one thing we wish everyone did.

Cancer does not discriminate.

The one attribute we hold people and employers and rules and laws to....it does better than anyone.
And dammit does that make me mad.
Not that I deserve NOT to have metastatic breast cancer just because of those things I listed above. Or that I wish cancer on a group of people I deem unworthy. But after 2 times already.....could it just have skipped me this one time???
But then who would that unlucky person be, if not me?
I certainly don’t wish it on a child.
Or a young adult just starting their life.
Or a new mom.
Or new dad.
Or that sweet lady at the grocery store.
Or that lovely gentleman at the drug store.

I honestly just wish cancer didn’t exist.

That we could discriminate against it;

“Nah, I don’t like you Stage 4 Metastatic Breast Cancer because of how you look, so move along. No place for you here. “

If only.

That was my 5 minute pity party for myself today.
And yours too.

Wondering what I mean by that?
A long time ago, and I mean like 15 years ago when Ethan was born, long before even my first breast cancer diagnosis, I realized I could spend all day feeling sorry for myself, or my situation, if I wanted. And believe me, some days I wanted to. Or I could spend 5 minutes a day doing the crying, screaming, what-if, why me, life is unfair pity party and then still have 1,435 minutes left in that day to do something productive. And when you only spend 5 minutes focusing on the negative each day, there’s a whole lot of good you can find in the remaining 1,435.

So I give myself 5 minutes each day.
Sometimes it’s in the morning when I wake, but before I’m out of bed.
Others it’s not until I lay down to try and sleep after a trying day.
Then, there’s the days it hits me smack dab in the middle of lunch.
Or dinner.
And some days, yes there are some days, that I don’t feel sorry for myself at all.
There are actually lots of those days.
Yes, even now.
Because I give myself that little allowance of time doesn’t mean I need it everyday. I only do because I know myself well enough to know that if I get upset or let the tears start, and I haven’t already got a plan in place and a limit on self-pity, I could be an emotional, hot mess dishrag and cry for days.

5 minutes.
And then it’s time to get up, get my smile on and move forward.
Try it on those tough days.
We all have them.
It really does work.
And I need people to realize that I don’t need longer than 5 minutes to hash over my latest dilemma with you.
You can cry when you see me, I get it. I’m amazing and this will likely kill me.
You can’t live without me, I mean who really could?
And you’re hurt and angry just like I am.
And I will probably cry too.
Because, again, emotional hot mess dishrag here.
And then I will probably crack a completely morbid joke about giving out shots at my funeral as you walk in.
(Ok maybe more appropriate at the visitation)
5. Minutes. Up.

One thing I cannot do,
Will not do,
Do not have the strength for,
Is to hold anyone else up during this ride.

I have my kids and husband and a very large family-y’all are included in this too-that I need to help gently guide down this shitty, bumpy path to eventual life without me.
And my own mortality to cope with.
So, I’m sorry if that seems selfish, but in simple terms, I just don’t have the time or energy.
By all means, I want you on this journey with me, and I am so thankful and blessed for all of the amazing support I have. And I will share with you every step of the way.
Ask your questions, there are none that scare or offend me. Many questions people have asked in the last couple of weeks have helped me move down paths I wouldn’t have necessarily thought of.
So don’t get caught up in the sadness of it all, take your 5 minutes like I do and then let’s move forward together.

And in moving forward, I have somewhat of a plan. And this may all end up scrapped and tossed out the window and changed ten times in the next month. But when you’re dealing with a terminal illness, that’s ok! Treatments change and minds change.
And situations change.

•On Tuesday 1/21, I am receiving my teaching education on the three drugs I mentioned in my previous blog; the Xgeva, Faslodex and Kisqali.
•I had a simulation planning CT to set up the potential fields of radiation for my hip.
•What I’m most excited about is that I have a consult with a KU Interventional Radiologist next Friday to see if I’m a candidate for a procedure called the Osteocool. This is a radiofrequency ablation done to bony lesions that is showing some pretty good success in regard to pain relief.
I will know more next Friday and share with you what I learn.
I can’t thank the people who sent me this info AND helped facilitate it enough.
Options are important to me.
And pain relief is coming in high priority right now too.

I’ve also learned that with Stage IV Metastatic Breast Cancer, I’ve kind of become the black sheep of the cancers.
There is far less funding and research on Stage IV MBC. And it is the reason 40,000 women die annually.
Cancer still in the breast
DOES NOT KILL YOU.
Read that line again and ask me if you have any questions about what that means....
That is why early detection is key.
Anywho-it’s like I’ve already got one foot in my grave. No sense of urgency in getting my meds figured out last week, no real help in regard to medication for my pain that I can actually take AND go to work.
CC Nurse:”Oh, we called in the Morphine for you”
Me: “ I can’t take morphine and go to work”
CC Nurse: “you work?”
Me: “yep, full time. 12 hour shifts. On my feet. In healthcare actually. Morphine not compatible with any of that”
CC Nurse: silence.
Ahem.

And not a good response from the Radiation Oncologist I met in regard to not starting Rad Therapy until my consult with the IR Rad about the Osteocool.
“Then I’m not sure why you’re here anyway.”
“We do this all the time and it’s fine”
“You can’t have both and if you can I’ve never seen any literature on doing it, I’m not sure there is any”
Sorry, I like options. And I have some.
Ps-time to improve the bedside manner. Literally bedside while I was lying in the Sim room CT scanner.

Did I mention my 5 minutes sometimes includes head shaking and big sighs....

And as much as I adore my Oncologist, I am seeking another opinion as to course of treatment. It may end up being exactly the same. Or someone may have some magic fairy unicorn glitter they can sprinkle on these bony mets and make them disappear and I need to hear that option too.

So this weekend I welcome some brainless TV binging with the fam, 2,870 minutes of gratefulness, and of course
a Chiefs WIN!!!


Always much love,
K