Tuesday, February 27, 2018

It's all perfectly clear now!

Dreaded end of "cycle"

Since cancer killing chemo drugs have a tendency to also affect other much needed Maria-cells, they are taken in cycles so that the body will have time to recover. My particularly delicious cocktail is prescribed with the killer pill 3-weeks on, 1-week off. The other pill I take...forever, I think. I am now two poison pills away from my much needed rest week.
Here I am wearing four layers inside the house
and wrapped up in my new safety blankie
The dog is on my lap but she wants to lick the phone
every time I get her in the pic
This is the first day I couldn't drag myself outside for my daily walk, just as well since it's cold outside. I am cold all the time to the point that I wear my knit hat and gloves in the house, my legs are weak and (fortunately) I am eternally hungry for protein, specifically. And so at the very end of the cycle, the effects of the "big one" tend to get more and more interesting. For example, for the last two days I have been waking up as if I had spent the entire night drinking and only collapsed in a heap on the living room sofa at sunrise...not that I have EVER done that in the past. Problem is, I don't remember disco dancing all night like I used to!
No, no, this just feels like the hangover without memories of the boogie oogie oogie...

Nothin' to do but sit

So I've been doing our taxes, why not! I have always said if you already feel dreadful might as well do something boring and, well, dreadful. A bit of trouble concentrating through my tearing eyes and semi-congested brain state, but I think I see the light at the end of the dividends and 1099s and profit/loss statements. No EZ-form for this household.

And I have been reading and learning about all kinds of exciting things, Zen principles, meditation techniques, Sudoku strategies, Windows 10, my new Microsoft Office programs ("apps" they call them, hmmpf), Rubik's Cube solving schemes, Photoshop Elements since I can no longer afford the "real" Photoshop subscription from Adobe, aaaaand! cancer, of course.
Some of the disease readings are popular books, some from my medical care-takers, some are medical journal articles which I read very slowly and have to stop and look up many of the terms. I particularly found this diagram on targeted hormone therapy enlightening and most interesting...ha ha, no, really, well, visually interesting anyway. But I got a big kick out of it so I'm sharing, and no, I don't understand a damned thing in it but it would make a great woodcut print. I guess I would add some swirls and stuff to match my style.
All perfectly clear! So THAT's what happens...

Wednesday, February 21, 2018

Toys in the mail I just LOVE do-it-yourself!

Just like Christmas

Well, spent about a week and a half unglitching an insurance glitch. I think I talked about this before but it turns out that my marrow boosting substance can ONLY be shipped direct to the consumer. Aaaand it costs $850 bucks "co-pay," the real cost is over $4 big ones, as in thousands. Let's see, add that to my two poison pills and I am now consuming about $16K PER MONTH of a variety of mysterious stuff.
This new one is an injection, mind you, but you know me, always open to learning new skills. I like DYI and all, but sheesh, next thing I may have to drive myself through the PET scanner. No big deal, by the way, millions of diabetes patients inject themselves daily. My own dear mother just had to inject herself twice daily to dissolve a blood clot.
But it is MY first time so I thought I would document the entertainment.

So I get this foam cooler via NextDayAir and immediately think it is a yummy batch of chorizos or perhaps some blissful jamon serrano from my favorite Spanish store, but no, no, it's... well look at all I got!
No chorizo, just a bunch of plastic toys

Just look at all the toys!
Inside that tiny orange box there are 4 tiny
dosages. Each sealed bag contains a bunch of sealed fun stuff,
apparently worth a total of $4K.
The big red container is to dispose of my "sharps"

19 pages of instructions and deadly side-effects

Ah yes, each of those items has a very specific purpose as outlined in the mega-novel that came neatly folded into a 3 x 1 inch booklet. Seriously...I ended up downloading the manufacturer's instructions so I could actually make out the writing, even watched a YouTube video.
I skipped the warnings and cautions because that stuff will make your eyes cross, your head spin and your heart go pitter-patter and I didn't want to be shaking when I actually poked myself with the syringe. I'll Google it later.
All the scary stuff you do NOT want to read,
just repeat: "my Doc knows best, my Doc knows best..."

Tiny instructions with pictures

Big part of the fun was folding it back up!

Easy peasy

Each of the four bags of goodies contains two syringes, a "big" 3 ml one and a little 1 ml one, three needles with a safety contraption that has to be assembled to the syringe, two band-aids (maybe that is what drives up the cost?), two alcohol pads, and more tiny instructions. What? it says I need a cotton ball that was NOT provided? I'm suing...

None of the procedure was dramatic at all, I was a bit disappointed. I had much more fun trying to figure out how to use a cement mixer. And once I caught my thumb in the car door and within an hour or two it had swelled up so much that I took a very thin drill bit and manually drilled through my finger nail. When the bit broke through the blood shot out about 5-6 yards! Now that was fun!

By comparison, this was really boring, just assemble and load up the syringe, pinch the skin, poke the needle through and push the plunger. Hey, did you know that once the needle pops through the first layer of skin it goes in without a fight? Thank goodness for belly fat, and don't worry, no pictures of THAT!
Hopefully my anemic self will perk right up.
My new tiny 1 ml buddy,
I need a name...hmmm...

Sunday, February 18, 2018

Life in the slow lane

Let's talk about Don Quijote

When I named my big poison pill Don Quijote I really didn't think much, let alone that there is some irony to my choice of names. This wonder-pill is supposed to kill cancer cells by attacking the nucleus, while my other pill Sancho Panza blocks the estrogen that cancer cells like to "eat."
Well, as you may know, Don Quijote was a knight of dubious mental fitness in a popular Spanish legend. There's more to the story than this, but basically he set off to kill giants in the Spanish countryside, trouble being that he ended up hallucinating that the many windmills that abound in the llanos were indeed giants. So he engaged the windmills with his lance and his battles didn't end up very well.

"My" Don Quijote, the wonder-pill, is supposed to kill cancer cell nuclei, and it is very good at it. Trouble is, it also kills other fast reproducing cells, like most chemotherapy treatments. These include all kind of Maria-cells, blood cells and hair cells and some others.
The whole thing is weird because I posted these pictures on the refrigerator so the stupid pill would know exactly who to go after. I meaaaaan, the difference is obvious! No?
Exhibit A: Maria-cell,
all happy and stuff
Exhibit B: Cancer-cell,
a.k.a. "the target"!
ugly and definitely not happy

My wonder pill is making my blood counts low so I have to correct for that. While I patiently await some blood-boosting stuff to come in the mail (delayed due to another tiny insurance glitch), I am living life in the very slow lane.

Hey, the slow lane is pretty!

I try to cope with that as best I can but I really want to be, and often imagine myself, running up my beloved mountain...it's just that my body won't come along right now. Still walking though, watching my immune system like a hawk because right now I don't have a lot of "lances and shields" to defend myself. And so the battle continues...

So my new walking pace allows me to enjoy things in a whole new way. Having been showered with beautiful day after beautiful day, I went to the park and got to watch the jackrabbits (desert hare) chasing each other; it was quite windy so the fair weather park goers were largely absent.

And just today, walking in my own neighborhood I stole a pic or two of a blooming almond tree, maybe peach? I think almond, we'll know soon enough! The bees sure like them blooms, they were buzzing all about.

Friday, February 9, 2018

Dancing in the waiting room and some "tumor numbers"

As promised, the dance!

Let me start by saying that the cancer center waiting room is anything but fun. Many of my fellow cancer survivors come in very slowly, some in wheelchairs, some towing oxygen tanks, almost everybody has someone with them. Not me, not yet, hopefully maybe please maybe not ever.

So I met this nice lady while we were both "on the chair," lingo for getting treatment, chemotherapy, bone medications, transfusions, whatever...basically you get hooked up to an IV and sit on a comfy chair while some meds flow through your veins for about 30 minutes.
She was with her beautiful daughter and I happened to talk to her in Spanish and then she talked and talked for the entire session--no! she stopped to gobble up a Subway sandwich at some point (eating makes the potential nausea of chemo tolerable).
She has nine children! she said proudly, and grandchildren too, she talked happily about everything, she tells the doctors "no tengo nada" (I don't have anything) and laughs and laughs. It is her second battle with the beast, she says. She lost her hair, she snickers showing me by removing her hat, and her legs hurt, she wears special socks, she tells me to take some ancient remedy, it helps a lot! "no tengo nada!"...and she smiled and laughed.

Two weeks later, thinking about her made me smile and so I walk in and sign in and wait my turn to the bloodletting room as usual. And there they are! Sitting right by me she hits me in the arm and scolds me for not saying hello. I told her I was spaced out and I was thinking about her. She is wearing a beautiful new hat and her daughter removes her to display her new growth of beautiful even and short hair. I congratulate her and she breaks out into her usual speech of take this, take that, tell the doctors "no tengo nada!" Then she starts singing happily with a Latin rhythm "no tengo nada, no tengo nada, no tengo nada..." and I start dancing in my seat and then she starts dancing in her seat and her daughter laughing and shaking her head.
Weeeelllll, not exactly like that but we had fun

Then I was called and I had to go so I blew them a kiss on my way to the blood lab. I still smile thinking about that.

And the winner isssss....

ME! After my first 21-day cycle of Don Quijote and Sancho Panza (Ibrance/Letrozole) my "tumor markers" are down by a LOT! My oncologist says "it's working great!" He seems more relaxed now, he greeted me with "hey you're still alive!" which cracked me up (okay so I have a strange sense of humor). I told him not to say that in front of my husband because that'll freak him out.

Nearly all my other blood numbers are good too, like liver enzymes and other weird things that were elevated due to the cancer. Of course my blood counts are low, in fact so low that I was prescribed a shot of something that's supposed to help stimulate my bone marrow to fabricate more red and white blood cells. I will be giving it to myself due to a strange insurance thing whereby the shot is considered medicine, and thus sent straight to the patient rather than the doc. So I will have to learn how to inject myself, cool deal!

More blood-letting on a weekly basis until my blood recovers. No bone meds this time, we do that every three months. I guess I won't be "on the chair" for a while. I'm celebrating all this by going to the mountains tomorrow and getting me a good dose of quiet and cool nature.
Our refuge in the pines

I built that bench!

Saturday, February 3, 2018

A "tiny" insurance glitch, good days, great friends

A morning of "holding"

Yikes! I get a bill in the mail for around $2400 from a lab I never heard of in Austin, Texas for "service" performed on 12-20. Quick check of the calendar, that was the day my left breast and adjacent lymph node were mercilessly poked several times and some tiny worm-like pieces of me were sent to a lab for analysis. Aha!
Start with phone call to insurance to find out what they need, my bill from the lab came with a note that said: "insurer needs results paperwork." Cryptic...
My bones are tired of sitting
On hold for 38 minutes while I check email, read news, read a book on "fear" as per Zen philosophy, check Facebook...oh finally! Insurance does not need results, they need a bill from the surgeon who performed the biopsy before they can cover my lab results. Makes sense, I guess.
Quick phone call to my Breast Care Advocate, they don't handle billing.
Frantic search for the place that actually performed the biopsy along with surgeon's name, good thing I keep everything. Subsequent phone call to the surgery center, hold for 12 minutes, transferred to billing, hold for 21 minutes.
And then FINALLY, someone tells me that they just resubmitted the entire claim to my insurance after the initial rejection. I suppose I have no choice but to believe that.
Quick phone call to the lab that billed me directly, hold for--NO HOLD! Nice lady will put my account on hold while all the paper-pushers talk to each other and hopefully everything gets resolved.

Good days, bad days

Again, I have to be thankful for the many many good days, walking in the park, awesome weather and lack of major side-effects. I read so many stories of people that "kicked it" and so many stories of people that succumbed to this horrible destiny. Some much younger than I, some left with no hope after diagnosis.
Where else! My fav park in the sunshine
Again, I feel blessed and lucky and able to withstand the bad days when my energy is sapped, my mental will falters, and my strength is a mere shadow of its former self. Prior to being diagnosed, all I ever asked for was strength and energy and I moved mountains and withstood every storm. Those two things aren't there all the time now and I am mostly bewildered by the "new" me.

My new friends

So I already made some "treatment chair friends." You know, you have friends and Facebook friends, and art festival friends and now I have cancer friends.

I met one of them at the biopsy place. Back then, she sat and towed an oxygen-tank cart, struggled with a folder with papers and a water bottle. She dropped the bottle and, in reaching down to pick it up, she dropped her folder. I hesitated for a second because her medical records were now visible to all but I couldn't just watch and walked toward her and helped her pick everything up. I had a plastic bag that was given to me at the reception so I took my stuff out and placed all her papers and her bottle in there.
Funny thing, we didn't say a word, she took my help, I smiled. She held her hand up to show me it was trembling uncontrollably. I grabbed it and held it for a few minutes, until they called my name.
I saw her again about 3 weeks later at the cancer place, she looked so much better and I almost didn't recognize her. Again without saying a word, this time she approached me in the waiting room and gave me a hug and we both smiled.

My other friend...well, I will leave that story for next post because it is just too funny and precious and needs much more space. Let's just say that a Spanish dance was involved...

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