8 down, 1 to go

For some reason, none of the nurses suggested that I suck on ice during my treatment to decrease mouth issues with this chemo drug until this treatment on Friday.

We did that routinely with the Adriamycin, but despite my previous comments at treatment about having mouth issues over the past 8 sessions with the Abraxane, no one suggested it until the next to last treatment.

I thought it was just an adria thing, so I didn't know to ask.

I hope it works, because the mouth issues have been really aggravating.

Still have enough hair to hide most of my scalp.  Yay!

In other news:  I recently severed all Face Book ties with everyone at work.

I've always thought it was weird to be Face Book friends with all of my co-workers, but it is part of the office culture.

They started sending me friend requests within a week or so of my coming on staff in 2013. Once one of them talked me into it (I was new, and went along with it so as not to "rock the boat"), they all had an "in," past my tight security settings, and that was that.

As a result, for almost three years, I have believed that I have had to be very careful about what I post, and what I share about myself, on Face Book.

Well, the other day, I unfriended and blocked everyone at work.  I no longer care if I rock the boat a little, and this rocks it VERY little, I assure you.

I see them every day.  I spend more time with them than I do with my husband.

If they want to know how I feel, they can ask me.

If they have a recipe for me, they can email it to me at work.  Whatever.  Like I said....I see them every day, there is NO NEED for us to be connected on Face Book.

(I believe now that the "need" is for them all to spy on each other!)

Plus?  That means no more hiding on my own little piece of the innernets.

What brought this on was an encounter I had with a new co worker at the office a little while ago.

She was brought in as a temp in December, and on her first day, she approached me and asked "Are you a Christian?  Because I am...."

"Oh, here we go," I thought....

I told her my usual answer: "I was raised Episcopalian."

Of course, she had NO idea what that was.  (eye roll)

Anyway,  over the first several weeks of her temping in our office, she and I started to become friends, or so I thought.

She asked me to keep confidences about her past as a drug addict, and she even bought me a couple of gifts, and shared her girl scout cookies with me.  We talked about make up, and girly stuff, and we talked about meaningful stuff.

She managed to extract from me that I am not Christian, and she claimed to be fine with that, and declared that she has friends who are Wiccan (which I am not).

But then, one day, out of the blue, she said "I don't want to get too close to you, because you might die from your cancer."

Or words to that direct effect, anyway.

I had ALL KINDS of stuff go through my head in that moment, but all I could do was stare at her.

What passed through my mind was:

You could get hit by a bus, but that doesn't mean I don't want to get too close to you!

First of all, I was fighting this fucking war for a full year before I ever met you.  Do you have ANY idea how strong I am, all I have been through without batting an eye, and how UNLIKELY I am to DIE from this shit?

Second of all, on the first day we met, you introduced yourself by saying "are you a Christian, because I AM!"

Really?

REALLY??

You're so proud of your title as "Christian" that you LEAD with it, but you can't even live up to the main rule of being a true Christian?

Third of all.... WHAT?  Did you just say that TO MY FACE?  And you claim to have been a nurse?

You must not have been a very good one, and that's why you work in an office taking phone calls now.

Nothing came out of my mouth, though.

I just stared at her.  I might have had a momentary expression of shock flicker across my face, I don't remember.

And I let it go to my back burner for a while.  To stew.

But yesterday, I needed to bring it to a boil, and pour it out.

Time to purge this, too, I decided.

I posted about it on Face Book (after the work purge) and asked my community for advice.

I got lots of good advice, and the prevailing commentary stream was to steer clear from her from now on.

I've been continuing to be kind to her, to smile and say hello, but for the most part, that's it.  The steering clear started the moment she said that to me.  How could it not?  She asked for it, and I complied.

I've been avoiding using the lunch room whenever I can, so that I decrease my chances of encountering her in there.  Thankfully, I think she has been assigned the 1:00 lunch time slot, which is when my lunch time ends, so lunch won't be an issue any more.

She may actually have ASKED for the 1:00 slot so that SHE can avoid ME.  Be that as it may, it works out for both of us.

The other morning, she didn't even return my hello, so it could be that this weirdness is almost over.

Unfortunately, we work in the same room, in a small office, so there will need to be ongoing contact, but I can be fine with just letting her be her two faced train wreck self, and keep her off my radar while maintaining polite office peace.

Another strong line in the commentary on Face Book was to tell her supervisor that it happened, even though it was several weeks ago, and this person has now been hired on permanently.

Not really for any other purpose than to make the supervisor aware of what kind of person this new employee really is behind her smiling, false-Christian facade.

One last thing people warned against was that she might "try something," now that I am not her work BFF anymore, and because she is clearly an odd nut.

I know something about her that she doesn't want anyone to know, though.

So, chances are very slim that she will go out of her way to try to do anything against me.

She may think that she has something to use against me, too, but I will touch on that here in a bit.

One of my Face Book friends said "SOCIOPATH!"  I now can kind of see that.

Sigh.....

I can't let it make my presence at work become any more uncomfortable than it already is, though, so I really am pouring it out.  I wanted advice, and I am considering all of it.  Then, I will let it go.  100%.

Breaking all social media ties with that culture is a BIG step in the right direction.

Meantime, I am becoming friends with a DIFFERENT co worker outside of work.  He took me to the mall yesterday, to visit the really expensive skin care counter.  He had chatted me up about it, and promised that he knew how to help me get some free stuff.

It was fun!  He's FLAMINGLY gay, and totally out, and he is part of my inspiration for finally letting go of hiding who I am.

I've been pretty shielded since moving down here, and it's been difficult, because one of the goals I have talked about here in my blog on occasion has to do with being and living as my AUTHENTIC SELF.

Having to hide on Face Book has been in direct opposition to that goal!  Having to hide who I am spiritually at work is also in direct opposition to that goal, but that's ever so slightly risky in Bible Central.

Lately, I've started wearing a pentacle pendant again, OUTSIDE of my clothing.  It feels right, and I dare anyone to say anything.  Legally, no one can do anything anyway...but people are sneaky.

I am pretty sure everyone there knows me well, and loves me for who I am, though, and it may come as no surprise at this point that I am not the same religion as they are.

One co worker was bold enough to pick my pendants up off of my chest and look at them the other day (I wear the pentacle with one that is a medallion that reads "Earth my body, water my blood, air my breath, fire my spirit").  She laid them gently back against my chest and did not say a word.

SO...since I am stepping out of the broom closet myself anyway, if new girl thinks she "has something" to use against me (my status as a non-Christian), well.... she doesn't.

ANYWAY.... we did yard work yesterday (mostly Dave did yard work with a rented chain saw) to finally start to get the big work cleaned up from the Thanksgiving ice storm.

Our poor willow tree got her broken branches cut out, and the pecan tree limbs in the back are now chopped into pieces that can be laid out at the curb for pick up.

We'll finish the cutting and dragging today, probably.

I am also going to cook more food for Pop.  He seems to be eating what I send to him, so that's good.

Happy Palm Sunday to those who celebrate!  It's Ostara on the Pagan calendar, so happy Ostara to me!

It was a dark and stormy morning....

Monday night, the coolest thing happened.

My brother, who was somehow required to drive his estranged wife and her kids from Chicagoland to Texas to tour a college campus (why her boyfriend or her parents couldn't do it, I have no clue), stopped by for a short visit.

By short, I mean an hour.

He finally got to see our house and meet our cats.  I got to take his new car for a test drive.

I just wish it could have been longer, and in the daylight, and that we could have had some time to show him around town a bit, like we have gotten to do with my sister and brother in law.

I've been up since 4-something this morning, but at least the steroids let me sleep for about 5 consecutive hours last night.

(The night of treatment, I slept for about 6 hours, in 2 blocks of 3 hours each, so it's going better with the lower dose of steroids.)

If I hadn't given up and gotten out of bed at 6 this morning, the thunder would have wakened me.

We are in for thunderstorms today, and they have already begun.  Thanks to the stupid time change, it isn't even light out yet.

I love the storms, though!!  Well, as long as the power stays on, of course.

A nice, rainy day lies ahead, with a pot of soup to make, and guitars to be played, and coloring to be done.  Sounds perfect!

Saw the doctor when I had my treatment on Friday, and he seemed very optimistic.

I have two more weekly treatments yet to go, and then the week after that, on April 1st, I will have my scan and results day.

When I had my "last" treatment in November, I had to wait a little over 2 weeks for scan day.  I am pleased that the wait this time is only a week.

The thing that excites me the most about the April 1st day, however, is that he wrote "Re-staging" on the paperwork.

Re-staging.

I would have noticed if that was on the paperwork in November, and it was not.

I have wondered all along if a person designated as stage 4 retains that status for ever.

Does it get changed from a stage to "remission" when treatment is 100% successful, or does it just get a new number, like Stage 1?

We will find out on April 1st.

Having my eyes on the prize (again), these next two weeks will be easier, no matter how bad the steroids hit me, no matter how bad the Abraxane side effects get, no matter if my eyelashes fall out.

Speaking of that, I am down to almost no eyebrows again, and half of the eyelashes are gone off of my left eye.  Sigh.

Not bothering to draw the brows on most days, since the newer glasses that I got in November sit right in front of them.

This, too, shall pass.

But I'm back to not liking to look at myself in the mirror again.

15 months of chemo has really effected how my skin looks, too.  Not just my face, but all over.  Probably from chronic dehydration.

I do my best to try to drink that recommended 64 oz of water a day, but when you're working, it's a damned pain the ass to have to get up and pee every 20 minutes all freaking day long.  As a result, I do not often succeed at reaching that 64 oz goal.

I'm hopeful that the further I get past the chemo finish line, the better I will start to look as well as feel.

Also, checked with the doc about continuing to take bone building supplements while also being treated long term with Zometa (the anti-osteoporosis drug that also cures bone cancer).  He said yes, so I will do so.

OH, and I FINALLY FINISHED the Game of Thrones books about a week ago!  I started reading them the weekend of my first treatment in January of 2015.  4750 pages... quite an accomplishment!

That's about it for this Sunday.  I think I will try to take a nap later.

I think I'll make French toast

How does that sound?

I am in my last month of "eat anything you want."  I weigh more than I have ever weighed in my life, and I want French toast.

I usually don't keep bread in the house, but I bought some last week with the groceries.  We always have eggs, so it's going to happen!

Just a picture of Black Peter, lounging in his bed while I worked my ass off cleaning the house yesterday.  Isn't he gorgeous??

Why was I cleaning the house, you ask?  Because the free cleaning never happened.

I worked my ass off LAST weekend making sure that they had something to clean, and then they canceled our appointment at the last minute, and pushed me back a FULL MONTH.

I can't let it go any longer, because I worked so hard to get it ready, so I did it myself.

This morning, my feet and legs still hurt from being on my feet all day long....but WOW is this place CLEAN!  Nice to do a spring cleaning.

Would have been nicer if the charity that's supposed to help chemo patients clean their homes had done it, though!

I was really excited about that happening, and was VERY aggravated when they called it off.

They said something about how they can only service so many charity visits a month.

Okay, I get that, you're a business.... but why in the hell did you schedule me in the first place?

Why in the hell didn't you call me SOONER to cancel??  They had already called to confirm when they called again to cancel!

And why didn't my "patient advocate" with the organization who does this not let me know?

The cleaning service said that they have to notify the organization of everything..... when they contacted me, when they scheduled me, and that they canceled me!

When the confusion ensued, I emailed my patient advocate to alert her to the situation and stupidity, and all she said was "thanks for the heads up."

She never admitted to knowing all about this, and not letting me know.  SO, I am done dealing with her.

I was NOT PLEASED.  This has been a cluster fuck since day one. Volunteer organizations apparently do not work very well.

This is supposed to HELP ME, not stress me.

Anyway, the upshot is, I was completely honest with them and said that this process has now taken so long that I will be finished with chemo before the cleaning service even ever shows up.

They said that's okay, and that I will still get my 4 months of free services.

Good.  Fine.

But right now?  My house needed cleaning, because it was all set to be cleaned.

Dave helped me.  He dusted up high (the mantel, above the doors and windows), and today, he is going to do the bathroom floor, and the laundry room floor.

I did the rest of the dusting (ALL OF IT, like even the window sills), polishing, and cleaning-- by cleaning, I mean including the kitchen backsplash, counters, sink fixtures, the outside of the stove, fridge, and dishwasher, and the bathroom.

I vacuumed the area rugs, but then I had to stop cleaning in order to cook up a batch of chicken and dumplings to freeze for Dave's dad.

By the time I was done cooking, I was completely exhausted.  I didn't have it in me to cook our dinner, so we ordered a pizza.

Remember that "eat anything you want" thing?

Yeah.... I will get back on track at the end of this month.  Most of you know what I mean by "on track," so I won't elaborate here.

Between the MUCH HOPED FOR end of chemo (and end of weekly steroid infusions), and getting the diet cleaned up, my weight should return to normal pretty quickly.  Maybe by summer, so that I don't have to buy new clothes again, like I did for the cooler months.

Anyway, where was I.

Oh....we had also gone to a clothing swap at the dance studio in the morning yesterday, and then to a thing at the fair grounds, BEFORE I started all of this house work.

Oh, and I did three loads of laundry too.

SO, today, after I make the French toast, I still have the hardwood floors to do, and I will be done.

Other than making up for lost cooking time yesterday.

I will still make what I was supposed to make for dinner last night, and put it away for lunches this week.

I've been up for 2 hours and Dave is grumbling about being hungry, so I am off to get that French toast idea underway.

OH, forgot to mention.... body and nasal hair is completely gone, eyebrows are down to about 50%, and scalp is still thinning, but there's enough length there that I can still hide the shiny pink scalp, for the most part.

Have a good day!

Aaaaand... done...

Well, cycle two is done, at least.

I plan to enjoy my two week break.  Next treatment is 3/11.

Update on Pop... the Visiting Angels service started coming this past week, so he has full time companionship.

The cost of the service is more than his monthly retirement income, but there is money in the bank to cover the overage.

He may not have anything left to leave to his kids and grand kids, but he will be able to stay in his home.

He's not happy about a stranger coming into his home, and he doesn't know yet that it's that, or a nursing home.

We'll see how it goes.

Have I mentioned that I finally signed up for Cleaning for a Reason?  It's a free cleaning service for WOMEN in chemotherapy.

Not sure why men don't qualify.

Anyway, no less than a dozen people posted links or sent me messages on facebook regarding this service over the course of my treatment so far.

When my cousin Marta did it, I finally decided to check it out.

I filled out the application, and I got a doctor's note indicating that I am in treatment, which I faxed to them.

And then I waited for like 4 weeks for them to match me with a service.

Then the service they matched me with never returned my calls.

Then the Cleaning for a Reason person didn't answer my email....

So I gave up on it, BUT I posted about the bad result on Facebook, since all of the referrals I had received over the past year were on Facebook.

My cousin saw my post, was upset, and contacted Cleaning for a Reason on my behalf and, lo and behold, my patient advocate was suddenly in touch again.

She called, AND emailed, and I was matched with a new service within about 48 hours, instead of 4 more weeks (and I am quickly running out of time that I will be in treatment, so this is good.  They come once a month for 4 months...I am not going to tell them my treatments end on 3/27 unless they ask, since it took them so long to get this process going).

The new cleaning service called me, and is coming on Wednesday to clean my house for the first time!!

Dave has a massive amount of vacation time, so he can be here when they're here.

I spent yesterday clearing away clutter, and putting stuff away that was just tossed into the office, since the room has not been used since it was a guest room when Margaret stayed here in November.

I posted about this "tidying" process on Facebook, too, and was gently chided for doing it!

Hello?

If I want to get the greatest benefit from people coming to sweep, mop, dust/polish, and clean, I have to make way for them to be able to DO IT!!

Cleaning up for the cleaning service had NOTHING to do with fear of judgement, as a couple of people said.

If I had been afraid of judgement, I would not have posted before and after pictures on the internet!

There was clutter seemingly everywhere.  How are they supposed to dust and polish a table that's covered with crap?

SO...I got that all done, too.....and did NOT clean, though I wanted to!

It's also true that, compared to some houses I have been in, ours is immaculate.

Truly.

We keep it pretty clean, and when company is coming, it's REALLY clean.  I treat our guests with respect, and prefer give them a clean place to stay.  That's just my way.

However when no company is due, and it's just us, and we work all week, and I am tired from treatment....well...."Stuff" just gets left here and there to be dealt with later, and then it lies there until one of us gets tired of looking at it.

Anyway, the floors are ready for them (I did not do my weekly sweeping or vacuuming),  the table tops are ready for them (I did not dust and polish), the dresser and book cases are ready for them (I did not dust and polish), the desk is ready for them.

All I did was "de-crappify," as my friend Cathy put it!

I am excited about this, but, now that it's finally happening, Dave is like "are you sure you want to do this?"

YOU ASK ME NOW?!  Too funny.

YES, I am sure.  I put it off for a year! You're going to be home when they're here.  What is the problem?

Sigh.  (I know he is going to read this, and I hope he doesn't mind my saying this... )

Anyway.... also did two cooking projects yesterday, and dealt with an algae bloom in the hot tub (which happens every time we change the water because there is so much algae in OKC water), so it was a very busy, very full, hard working day for me.

I didn't even look at my phone to see if anyone called or texted.

Today, we are going to try again to get Turbo Tax to work. Wish us luck!

Just another Sunday during chemo

It's amazing what you can get used to.

I fucking hate going to chemo, but it's become "normal."

Mouth sores, hair loss, fatigue, and numb toes have become "normal."

So. Fucking. Sick. Of. It.

Okay, there, I let it out.

Back to being Positive Paula.

We are winning this war, and it's all worth it.

Got lots of stuff done around the house yesterday, while Dave got lots of stuff done away from the house.

He ran errands and I cleaned.

His dad has been falling a lot lately, so the family spent a few days trying to decide what has to happen next.

Dad can't be left alone during the day anymore, so it looks like a visiting aide service will be the first step for Dad.

Dave's eldest brother is working on getting that to start next week.

Dave was down there yesterday, getting the locks changed so that we have a key, and so that Becky, who lives with Dad, finally has a key.

Turns out, Dad lost his key months ago, and Becky never HAD ONE, so they have just been leaving the house unlocked.

Apparently, everyone was fine with that.

I didn't even know about it, but now it's fixed.

Anyway, while Dave was out, I swept, vacuumed, and mopped, and got three loads of laundry done.

It was a much nicer day yesterday than today, but, sadly, we missed our chance to enjoy it.  It has been freakishly, unseasonably warm for several days.... UNTIL today.

I had hoped we could get the bikes out today, but it's colder and windier today, so no go.

Today, we tried to get our taxes done ourselves on line instead.

It costs a ridiculous amount of money to have H&R Block do it for us just because we have a couple of extra schedules.

So, we decided to try Turbo Tax.

Unfortunately, Turbo Tax is a pain in the ass unless you figure out how to get to actual, you know, tax forms....and unfortunately, Dave did not figure out how to get to actual tax forms, and instead was stuck in some stupid "GUI" maze.....it was really aggravating.

He tried to get help from customer service, and they also did not seem to know that there is a version of their own soft ware that DOES have forms that we can just fill out and get it the fuck over with.

Idiots.

SO, after 45 minutes on hold, he gave up, and will try again next weekend or some evening this week.

A friend who owns a copy of Turbo Tax assures us that there IS a tab you can click to take you to forms if you don't want to mess with the bullshit "GUI" format.

What the HELL IS THAT????  Tax forms are tax forms...Good Lord.

It should only take about a half hour of plugging numbers into forms, once we can find the forms.

Okay, what happened to Positive Paula?

Once our "busy-ness" for yesterday was over, we got to enjoy our hot tub on a mild evening last night, and then I slept for 11 hours.

It's so nice when I can get the rest I need.  Happens so rarely.

When we eventually get our tax refund, we can get the things done to the house that we put off from last year, mainly PAINTING the outside of the house and the shed.  It's looking VERY shabby, and needs a paint face lift.

Dave and our friend Andrew replaced the front of the shed last year, and then Dave and I put on three coats of primer.  So the primer white is still just sitting there for all to see.  It will be nice to have the paint go up at last.

Off to cook a pork loin and make some slaw. Hoping for a good rest of the weekend, since there's so little of it left.

Happy Valentine's Day

We're going out for a date!

If you have a Valentine, and you mark this day, have fun!

If you don't, or you don't, have fun anyway!

My hair has started to fall out, so I am trying to just focus on having a fun day.

The days between...

This past Friday was my chemo-free Friday, marking the transition from Phase 1 to Phase 2 of the current batch of treatments.

It was actually very nice to work all week!

Not too much going on this weekend.  Took Pete to the vet.  His allergies are as bad as mine, and he has rubbed the fur off around one of his eyes.

He was very good for the doc, and didn't even flinch when she gave him a steroid shot.  He seems to be feeling better already.

After we brought him home, we went out yesterday and shopped at a thrift store for some shirts for Dave, and then had a friend over in the afternoon.  It was a good day.

Today is about staying home and cleaning, cooking, and doing laundry.

Got the steam cleaner out and did the floors.  That's pretty hard work, but so worth it.

I felt really sick over night, with a migraine and a very upset belly.  Took a compazine and ibuprofen around 3 am, but was still awake from 2 til about 6:30 this morning.  Thankfully, I never threw up, but I sure felt like I was going to.  What did happen, though, was very unhappy intestines.

Dave and I ate all of the same things yesterday, so I think I had a little bit of a bug.

Feeling well now, but still not wanting to leave the house.

Dave's birthday is tomorrow, and I am actually going to bake a cake and make my mom's chocolate icing recipe.

All of the fund raiser money is in the bank, and we are just waiting for the bills to start rolling in.

Back to treatment this coming Friday for the next set of three weekly treatments.

That's about it for this week.