Progress

The home improvement projects are progressing.  Pictures below.

Last weekend, Dave, and our young friend, Andrew added lumber and bracing brackets to the pergola over the hot tub.

Late in the week, the contractors showed up to finish out the car port extension and install the new  fence across the new end of the car port.

Then, yesterday, Dave removed the old chain link gates, and dug out the rotted tree stump that was in the way of the new covered parking spot.

The new carport area is now fully functional, and with the original bit of fence to the right, the house to the left, and the new stockade fence and gate at the end, whichever car gets parked in the new spot will be very well protected.

It will almost be like being in a garage.

Unfortunately, the exterior painting can't be done until we have 4 or so days of sunny, dry weather, and the rainy season just started.

It could be a while before we see the paint job being completed.  That's now the only thing left.

Before and after pictures, well... after.

Oh and here are some pictures from the side shed rehab Dave and I did ourselves on March 26th.

My hair continued to fall out heavily over the past week, so the other night, I trimmed it short.  A little TOO short in one spot when I held the trimmer at a bad angle.  Oops.  So then, I had to even things out, so now it looks like shit.  OH well.

Hopefully, the falling out will stop over the next week or so, and regrowth will begin.

It's now been three weeks since my last treatment.  This past week was my first without any appointments or any reason to go to the clinic.  SO nice!

My sense of taste is almost back to normal, and the dry mouth is almost completely gone.

Fatigue remains an issue, but I have been doing my best to be active, taking walks and using home exercise options.

I also returned to dance class this past Monday night.  It felt good, but looking at myself in the mirrored wall was a bit harsh.

I will get over it.

Cooking and staying in on a rainy day is what's ahead for me.  Sounds lovely.

Hope you have a good day, too, Gentle Reader.

2 weeks after

It's been two weeks now since my last treatment, and my eyebrows and eyelashes are gone, and my hair is falling out more than ever.

Yesterday, I realized that this situation is unique in my chemo experience, so I did not know at all what to expect.

But having the hair loss (other than the body hair, which fell out right away) START after the end of treatment was certainly NOT expected.

Back at the beginning, the first round of chemo was 4 treatments (Taxotir and Cytoxin) in three months, and I lost all of my hair starting about 10 days after the first treatment.

Then, there was a break for surgery, during which I regained a LOT of head hair.

We resumed chemo with different drugs after surgery (Adriamycin, the "red devil").

I lost my re-grown hair starting, again,  about 10 days after the first treatment.  I lost my eyebrows and eyelashes and everything else after the second treatment ( I think..it's been a long time).... so I was already as bald as I was going to get when we started the last cocktail of different drugs (first Taxol, then Abraxane, ending with Abraxane--that's the one that's $4000 per treatment) in September.

Then there was another break after the last treatment in November.

I took almost 2 months off between the end of 7 months' of constant treatment before we started this most recent round of 9 treatments with the same drug that was used at the end of everything last year.

During that break, my hair grew in thick and my eyebrows and eyelashes came back.

The point is, I have no point of reference of going into receiving Abraxane without already being bald from months and months of treatment.

The body hair loss happened pretty quickly, but the head hair was not falling out much at all, and the eyebrows and eyelashes were staying put....until after the last treatment on March 25th.

Since then, my hair loss has been profuse.  Especially the past week.  They eyelashes have all fallen out since last weekend.

I am REALLY HOPING it stops soon!!  I can see my scalp through the spikes when I put my hair gel in, and I can feel my scalp much more easily when I shampoo.

Sigh.

SO unexpected.  You'd think that it would have started at 10 days like the other times, instead of waiting until the drug was out of my system.

I've also been really fatigued (compared to how I normally feel....I can still get stuff done and take my walks, but I don't feel as good as I've felt over the past year of treatments).

The good news is, my dry mouth is gone, and the mouth sores have stopped.  Things are even starting to taste normal again!!  YAY!!

Got my first "maintenance" injection on Thursday.  The shot itself was pretty painful, but no ill effects!!
NOW, I don't have to set foot in the clinic for ANYTHING until May 5!!!  How nice that will be!!

In other news, the free cleaning service finally started coming.  They did a very nice job, and it's been so lovely to NOT have to clean my house this weekend!

They will come back three more times, once a month.  I am so pleased that I qualify, even though chemo is over.

Chemo side effects certainly are NOT over yet, so it's a blessing.

The home improvements have begun, so our feeling of being "rich" (while the tax refund and Dave's bonus sat in the bank) will be over soon.

I am still SO very grateful that the fund raisers that were done on my behalf (and by me personally) are paying the medical bills this year.

These home improvements are WAY past due, and had to be put off because of the medical bills last  year.

It will be so nice to get them all done.

As I think I posted before, Dave and I did the rehab on the shed ourselves two weeks ago.

The two front room windows were replaced with craftsman style this past week.  Dave found them at a place called Architectural Antiques (not the chain, a privately owned local place FILLED with junk).
They were really inexpensive, and our painter is also a construction contractor, so he was able to swap them out for us as part of all of the stuff he is doing for us.

Then, yesterday, they came and did the carport extension.  Once the fence is replaced/moved up, we will be able to park both cars under cover.

Now it's supposed to rain for a couple of days, but by the end of this coming week, the fence and the exterior painting of the house and shed should all be finished!

Bye bye, big pile of money!

Breathing room

The scan results showed that the spot in the liver had only shrunk by 2mm after 9 doses of Abraxane.

My doctor feels that more chemo at this point would not produce enough benefit.  SO, I am done with chemo.

This gives me a sense of relief.

He also explained that there COULD be microscopic lesions elsewhere in the liver, and that pursuing this one spot with more aggressive therapy (i.e. radiation) may also turn out to be moot, should those other possible spots decide to start growing.

Our approach is to do nothing, wait, and watch.  We will repeat the scan in 3 months.

While the looming black cloud of  "your liver could actually be full of cancer and we just don't know it" (how I heard the conversation), is hanging over my head, the over all scan results were favorable.

No new metastases, AND, the doc did re-confirm his previous stance that the possible reason for the spot to NOT respond well to chemo is that it MIGHT only be scar tissue.

Unfortunately, we don't know, and can't find out.

The uncertainty remains, so I was less than jovial about the scan results.

Oh, and restaging doesn't mean anything, really.

I will always be a stage 4.  That never gets taken off of my name.

In other news, the scan report included the words "evidence of previous hysterectomy."

Since I have never had a hysterectomy, we naturally questioned this.

While the doctor's only response to this was that he would put a call in to the radiologist to confirm, the head nurse had a more elaborate response to the question.

She explained that chemotherapy can cause the uterus to basically disappear.  I guess because it is a hollow vessel, and not a solid-tissue organ, what happens is that it collapses in on itself, and it shrinks up like a raisin.

Disgusting, but also apparently true.

She put the call in to the radiologist, but since it was Friday afternoon, we did not hear anything back to either confirm  nor deny this as being the reason for there not being a uterus on the scan.

If this IS what happened, rather than some technical or other kind of glitch, at least I have the comfort of knowing that I do not have to worry about my terrible periods coming back once my body recovers from chemo.  Bonus bright side to getting cancer.

It WOULD have been nice, however, to have known about this possibility prior to beginning treatments.  Informed consent and all that.

**EDIT Monday 4/4/26-- The nurse called.  I STILL HAVE A UTERUS.  I did not ask why the report said otherwise.  It has been amended. **

Be that as it may, I have 3 months to breathe, recover, and just go for my monthly bone injections.  I won't know what to do with myself!!

aaaaand DONE!

I'm thinking that I really AM done this time.

My nurses held a little party for me during my treatment on Friday, and that didn't happen the last time, so....

Yeah.

It was so sweet.  They got me a cake and little brownie bites (the brownie bites were gifted back to them, we could not take all of that home!).

And they said "we love all of our patients, but some of you, we love a little bit more.  You're one of the ones we love a little bit more. You're a rock star."

It was very sweet of them.

The ice chips did work wonders after the previous treatment, so I did it again.  Hoping for continued success on my last time recovering from chemo.

Count down to scan day.  Breathing.  Breathing.

Dave and I demolished and re built the side shed yesterday.  I channeled my steroid rage into the demo part, and it was VERY satisfying.

My muscles are sore, but it was SO worth it.  I kicked and hammered and pounded, and I channeled not only the 'roid rage into it, but also 15 months' worth of anguish.

It was very therapeutic, and the shed looks great!

Of course, he did the bulk of the really hard work (hammering the new siding up), but I helped as best I could with fitting the pieces into place, and helping him with the power saw.

When I wasn't helping, I was pulling weeds, vacuuming, cleaning the bathroom, and doing other yard work.

Yeah, I guess I am a rock star.  Chemo on Friday, and all of that on Saturday.

Our tax refund paid for the lumber, and is going to pay for getting the shed and the house painted.  It will be SO nice.

We are also getting another length of car port installed, and the fence moved up, so that both of our cars can be protected from hail.

HUGE upgrades to how our home looks and works!!

Today, I am going to do more low key stuff, like cooking, entering receipts into the check book (I know, I'm old school), and maybe some coloring.

Dave will go down and see his dad, pick up food containers (if Pop has eaten any of the food I have been making for him), and some paperwork.

Should be a good Sunday.

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!