the edge, the edge, the edge the edge the edge the edge THE EDGE.....

DAY125

I had to find at least a version with Clarence in it. His last live performance <3 (((Big man)))
Feel free to have these little musical vignettes serve as soundtracks for each post- I try to pick them to go with my daily ramblings to accompany the post like wine to cheese.

Anyway-
I wasn't used to coming into work on a Monday- that's usually been reserved for chemo  but this week we're kicking it on a Tuesday. I got some work done but dragged myself around today the best I could. Still soooo tired.

My mother is nasty sick so here's to hoping she feels better I won't have to drive myself tomorrow.
Someone needs to mind the babies.

I finally figured out the reason for my crazy exhaustion.
Low counts.
I get my LabCorp results when my oncologist retrieves the results- I guess he did it this morning because I got the weekly alert in my email today.
Shit! I was doing SO WELL. they were actually on the upswing-
WBC count is 3.5 (Normal is 11 and up) right now.... the biggest gap from one appt. to the next  since I started chemo. Weekly we kept dropping .1 every week- then I started on the Turkey Tail and the numbers stopped, then bumped a little back up.
Now we are back down. by .3 from last week.
Ugh.
They don't give you chemo if you go under 3.
I was doing so good!
eek!
I have just been lying down.
I got a good 6.5 hours of work in today. Crashed hard at 1:30. Home I went.
They told me this would happen at the end- the end of the line- counts are so low you just shouldn't be doing anything. especially wearing a top hat and dancing on a Pennsylvania farm at midnight.
This Friday weekend I have to miss my husband and Keller Williams playing music together. Keller is also laying down some tracks for the husband's new album. And I am missing it.Plus I miss seeing the guy- he's a great person and wonderful friend to us.
Unless by chance all this juicing and turkey tail and raw garlic i pounded today and for the rest of the upcoming week turns me around. I doubt it. But even if it were to happen, I'd probably lie low anyway.
And Souper Groove. Missing that too.
I had my day in the sun for a little bit going though- for that I am grateful.
No more supermarkets, fun trips out to the store. i live in one of the most densely populated areas on the  globe- I am not taking any chances on anything.

I'm a gonna be a hermit.
A bald Yankee lovin' hermit.
with a Mr. Hermit husband who stood by his vows of "in sickness and in health" to run to the store before he headed out to record his album tonight in the studio. To make sure the toilet paper in the hall closet was all stocked up. Thanks hun. (he hates using coupons with his beloved self-checkout aisle).

And this chemo brain stuff is no joke either- this is real.
Today I looked at a bag of carrots and called them pineapples. And for 5 straight minutes thought today was Friday.
wtf?

lol.

have yourselves the best evening of your lives tonight~*
Missing you, outside world and people!!!

xo

b

la la la, connect the dots.

DAY108

It's a down week.
This bone pain is creeping up to 11.
I have a cane, but I'm doing my best not to use it if I have to- It hurts to walk though, and comes and goes.
At night- forget it.
Hands and feet are getting more burny tingly- I still am keeping an eye out for any effects like not being able to put earrings in, or use a pen or hold things. That would mean the Taxol is starting to cause nerve damage and I need to stop.
I saw a breast cancer patient going through chemo at my last appointment who had to stop her Taxol- she was really frustrated. I can't say I blame her.
Monday is Taxol #8. 4 more left.
I can hang in there, I keep saying to myself. and I will.
Being very tired- a sore throat that refuses to leave- it's all there.

I was able to get to the chiropractor today and it helped so much- Maybe I can finally get some sleep tonight if I'm not waking up in a puddle of my sweat from the hot flashes that seem to keep getting hotter.
I would say I had my first real good cry last night. The kind of cry that hurts after a while. I let it all out.
Of course I am pissed off- but why my kids have to deal with this is the hardest. And my husband.
They hold it up so well together- we all try to- but this cancer stuff surrounds a family so much more than anyone can imagine. Treading water with sharks all around you is how I can describe it. The surface is calm but under the water is a scary place for anyone without a floatie. Gotta have the floatie. Always.
The driving, the work, the time that's lost, the times when my bone pain gets so bad and I cry and my kids see that, or my daughter crying by herself scared for me- that fucking breaks my heart. It fuels the fight- but it's so hard sometimes.
I am holding every moment of my life from here on out with the highest regard- I'm gonna live it too.

I'm just tired this week. sooo tired.
My eyelashes are coming out more too. I can now count them.
My hair is still growing back too! I can now brush the 'fuzz' into an actual direction. EEE!
I'm getting my hair back! Tony Danza Redux!!!!

and....Pinktober is coming. I'm starting to notice the "Be aware" or "buy pink to support" ads for everything.
Now- I'll preclude that I don't have anything against pink- I have received some really sweet gifts and cards and notes with pink on them- or ..'the ribbon', I don't mind.
What I do mind is the countless people who bank on this nasty disease. And find a way to capitalize on such a horrible disfiguring shitstorm this disease is. In fact- it is far from pink.
Pink is so pretty- the 'color' for breast cancer hardly depicts at all the experience.
I cringe when I hear of a certain organization that has trademarked their ribbon logo and the words "for the cure"- when their yearly numbers have around 10% of their total proceeds actually go to "breast cancer awareness". The other 90% goes to paying their salaries (whose CEO makes a cool half mil a year), and advertising and contributing to political campaigns. I won't go into there- but it just makes me sick that society is hornswaggled into thinking that buying pink things is doing their part in curing cancer. It isn't.
Contribute to your local American Cancer Society, or Stand up to Cancer. Or find a local organization that helps the uninsured and under insured with financial help for those dealing with cancer. Or a grassroots fundraiser that donates its proceeds to clinical trials to help others. There are so many ways to lend support without the pink crap.
 That other organization that has created this whole Pinktober thing to begin with and their "races for the cure"? They line their pockets with well intended donations and i refuse to support anything they are about. I feel bad a woman named Susan had to die and suffer and this is her legacy. The almighty dollar sign.
That's not awareness.  Buying pink M&M's, or cupcakes with boobs on them, or football players with pink shoes doesn't do much but make more money for a rich CEO.
My life and the lives of everyone in the trenches of this shitty disease is a commodity to these people.
And that ...that's messed UP.

I hesitated posting my feelings about Pinktober but this is America and I'm gonna say what i want because I can. So there.

On a lighter note- another new wig finally arrived! It was a birthday present from my family- I picked out a super retro flip modeled after Jean Shrimpton's hair. and it's all violet. It's a crazy do. Can't wait to rock it. I need eyelashes first though.
wootwoot!


xo