down days

I am missing things these days.  Today I missed the annual Memorial Day Weekend bbq at Melissa's place.  A mix of pain and such keeps me at home for the most part.  The chemo drugs have me feeling nauseous much of the time, and I'm unable to eat very much.  Had half a ham sandwich today, which was about all I could tolerate.  Some days I don't want to eat anything at all.  I will probably get some Ensure, or Boost, soon, just to get some nutrition.  Losing weight is nice and all, but not at this cost.

The weather has been quite warm lately.  Not good for my breathing, or for anything else for that matter.  I had hoped to hold off on using the air conditioner, but I truly need to make myself as comfortable as possible, so its been on for a couple of days now.

I haven't even felt well enough to make it across the hall to visit with Evie.

The day before yesterday I had to have an MRI done of my spine.  That whole ordeal took a lot out of me.  They were backed up, and I had to wait for hours before even getting it done.  Had 2 MRI's done... one without contrast, and one with.  A total of nearly an hour and a half inside that noisy tube.  Not fun.  I know my oncologist wants to see if the metastasis is causing any nerve impingement, which might be causing the horrific leg pain I get sometimes.  I don't see her again until the 9th of June, so it will be a while before I learn the results.

I spend a lot of time watching Netflix, and some television if anything good is on.  I don't do much reading because my glasses aren't the best, and I need new ones.  I do some coloring now and then to fill the time.  Very fatigued, so I sleep a lot when I can.  Usually a couple of hours at a time.

I wonder when the radiation treatments will start.  It's going to be very hard to do that five days a week, especially with the summer weather.  Will it help with the pain, I wonder?

I know this is all pretty boring stuff to be reading,  but it's what my life is about right now, so it is what it is.

oral regime begins - technicalities

Just past 9pm on this monday.  I have not slept since saturday, so I'm pretty out of it.  Lots of chest/abdomen tightness pain pressure going on, and breathing is always hard.  Sometimes pain sites change from day to day, or through-out the day, or go on for days.. there's no way you can predict its path.  Rarely is the body still, and at peace.  Sometimes, it is, for a little while at least.
Today I started the oral meds.  Letrozole (Femara) and Ibrance.  The constrast of costs for these two drugs is crazy.  The Letrozole costs maybe a nickel apiece... crazy cheap.  The Ibrance, on the other hand costs close to $100 per pill.  They are meant to work together, the Ibrance specifically enhancing the qualities of the Letrozole.
Leterozole is meant for post-menapausal women with HER2-positive breast cancer.  HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells.  Ibrance is meant to be used with Letrozole.  The effectiveness of Ibrance plus letrozole is based on a study that measured progression-free survival. There is an ongoing study to find out how Ibrance works in combination with letrozole over a longer period of time.
Both can have side effects similar to iV chemo infusion.  Ibrance includes more serious effects, with low white blood cell count being the most common, as well as low RBC and platelet counts. Pulmonary embolisms are also common.  Regular testing and treatments for these things will be on-going.
There are at least a dozen other common chemo side-effects, including "unusual" hair thinning or hair loss.  Not too sure why they include the word unusual.
There are many things to watch out for, but I prefer not to "expect" the side-effects, lest they are self-fulfilling. Often, many of these effects will not even show themselves.  Time will tell, and I will be on these drugs for however many years I have ahead of me.

death and netflix

On the shows at the end of season two of Grace and Frankie, there are these scenes with a dear friend of theirs, called Babe, who is choosing to end her life with dignity, as cancer has taken her over.  She is a nutsy character, play by the inimitable Estelle Parsons.  She has lived an over the top kind of good life, is probably in her 70's, and wants Grace and Frankie (Jane Fonda and Lily Tomlin) to help her on this journey.  Quite an emotional turmoil for the characters.
Now suddenly, there are new story lines that somehow affect me.
I have no ide,a or want,  to end my life, but it makes me wonder.. when does someone possibly come to that cross-roads, if ever?
I know this character was more or less at the top of her game, and wanted to go out in that fashion, but deep inside I really don't get that.  I mean who's to say how long she could've gone on at that level... or maybe not even at that level... so what that it might be less.  If you can't handle it, then so be it...  But to check out?  Just doesn't seem right.
My opinion.
Anyway, enjoying these shows that I find on Netflix every now and then. But it's hard not to binge-watch them, and then you have a long wait till the next season starts.
Sam Waterston and Martin Sheen are also in this one.  They are the ex-husbands of Grace and Frankie, and come out at the beginning of the series, as gay, having been in love with each other forever, and they proceed to live together.
The main characters are all 70-something, give or take, and there are their adult children, who interact regularly.
It's very enjoyable.

good news

I have been approved for the $2,000/month copay for the cancer drug, Ibrance,  I need for one year, then will reapply.  Very relieved.

just bull-shitting

Today I lashed out in anger on my facebook status.  Just feeling tired of answering this question and that, or being told you gotta do this or that, and do it now.
My sister said my words were harsh, and no doubt wondered if I was referring to her.  Sure, in part, but mostly I know she just really cares.
My therapist, Alice, on the other hand, has begun to irk me.  Maybe I am being harsh in my perception of her, but you know what?  I have some anger, and I need to express it.
In the beginning of our sessions together, she asked, as do all therapists, if I want to have my family privvy to my therapy sessions.  I said no.  That was how I had it with Eleanor for 12 years, and I wanted to continue that way.
So... when Alice calls my sister every time I miss an appointment, it pisses me off.  I never gave permission for that.
I know that maybe what I'm going through now is a "different" situation, but I'm sorry.. I don't want my actions under anybodies scrutiny.
OK, I didn't call to cancel my appointments with Alice or Dr. Normil, today.  My bad.  Nevertheless, I need my own space.
My priorities now, medically, are with Dr. Burdette, and the cancer center.
I may actually have Alice close my case with the mental health center.  I haven't found much benifit from it for a pretty long time now, anyway.
I'm mad because I can't walk very well, and it's scary.  It's all just happening so suddenly.  Maybe it'll change with treatments.
This is all very private, and nobody really has a clue what's going on inside of me.
I'm not saying I'm right. I may even be wrong.  But if mad, angry, pissed, is what I am, then so be it. It's a crazy time, and I need to feel free to express myself.   I don't want to hurt anybody, and I fully expect to be called out if I do.  Don't want anybody to feel they need to walk on eggshells around me.  But let's face it...if ever I was feeling sensitive, this is the time.
I don't particularly like being in the position of needing the care.  I am more used to being the care-giver.  Not quite ready for the complete roll-reversal.
Sometimes I go down the road of "why me"... that's a really stupid one. because why not?  I don't think I'm being cursed because of past misdeeds.  That kind of crap is bull-shit.  Nevertheless, that silly question does pass one's mind.
Oh Shinnah Fast Wolf said that this kind of stuff happens so as to bring about a healing in the family.  But I don't think my small but tight knit family has really been in the need for a healing.  I think we're pretty together in that respect.  Of course, lessons will be learned.  Can't get away without that happening, unless you're completely unconscious.
Well, I guess I just wanted to vent here a little bit more.

addendum:
So I get a call from my therapist this morning saying "I need to close your case."  No good reason why, except that I can't make it to the clinic as much as a need to, but she had said we could connect by phone when needed.. now suddenly not even that.  Wow, nice support, huh?  Fine by me.

treatment update

Looks like I will be treated with oral meds (Letrozole and Ibrance), and radiation treatments.
The leg pain is indeed a result of the bone metastasis.
The cancer center is taking over my pain management, thank goodness, so I can take something every four hours instead of every eight.  The meds barely touch this bony pain, but at least it's a little something.  It's possible the radiation treatments will help some with the pain.
My oncologist says she is optimistic that I will do well with the treatments.
Getting an MRI soon to see if there is any nerve impingement.
It's hard to walk, and I'll probably get a walker to help with that.

That's about the size of it.  Just taking it a day at a time.

Running Wolf

running wolf scans the white horizon
no one there
something is wrong

she runs.

there between snow whites and
whispered blues
a heaping of human flesh
appears

curled in on itself
neither being born nor dying.

she smells the perimeter, hangs
open her mouth, breathing in
the familiarity of spirit

and at once
licks at what is wounded.

she will stand vigil for
however long it takes

until she dances
once again.

_______________________________________________


photo credit by Sandi, on Flickr

pain

The pain I have been experiencing in my legs has been the worst ever.  I'm not too sure what the hell this is all about, but it is heads and tails above the bad pain I've had in my abdomen/chest after the operations.  Wondering if it is related to the bone metastasis... I really don't know.
I went about five days with no pain meds, but finally made it to the pain management doctor today.  Evie had to come with me, because I wasn't even sure I could walk alone.
The Percocet took the edge off, but it didn't last long enough.  Should wait eight hours between doses, but after four or five hours I was back in a state of misery.
This is not what I'd like to be writing about, but it is what it is, ya know?
Tomorrow I see my medical oncologist, Dr. Burdette-Radoux.  She'll have the results of my bone biopsy, and will outline my treatment plan for now.
Afterwards, I'll probably meet with the social worker at the cancer center to see if I can get some kind of help with paying for medications and such.  Maybe I can get a Medicaid spend-down, I don't really know.  I do know that it all too hard for me to handle financially.  It is truly a choice between food and meds.  If it wasn't for Evie helping me out, I have no idea what I'd do.
I can't help but wonder how long I have to live with this disease.  And in what shape?  I pray for better days to come.
However much I miss her, I am glad my mother is not around to witness what I am going through.  It would have hurt her so bad.  Nevertheless, I miss her gentle touch, and soothing ways.

those waking hours

I wake, typically, with a sudden jolt of pain in the middle of the night.  Familiar pain, unwelcome, nonetheless.  So I get up to eat a pain pill, knowing I will spend at least a couple of hours slipping closer to normalcy.
Yesterday I visisted at Melissa's, with Tree.   
Had the pleasure of observing Logan's reading skills, which duly impressed me.  He says Math is his favorite subject.  I told him it was my worst.  He is just the sweetest boy, I can hardly explain.  Such a gift.

Loving his first pet, Linny, the Guinea Pig

The weather was, and has been, damp and cold.  It sinks right in your bones, and aches you up.  Thinking I need to get some Tiger Balm.  I prefer the White, but that is a little harder to find.  I like white flower oil, too, but I'd probably need to go to Chinatown to get that.  Actually will be in Brooklyn's Little Chinatown next week when I go to the Cancer Center to see my oncologist.  Store fronts, though, are usually in Chinese, and it's hard to navigate.  Not sure what each store actually sells, except for the food stuffs, mostly.

Had a pleasant surprise last night.  I was chatting with my 2nd cousin, Martin, on Facebook.  Martin is my mother's nephew, and somewhat of an ancestry hound, who found my mother several years ago.  My mom, more or less, orphaned by 5 or 6, when she had already lost both parents, has had many mysterious parts to her life.  In another country, Guyana, she had 6 half brothers and sisters.

It has been interesting to learn things from Martin, who has done (and is still doing) many years of rigorous research.

Anyway, tonight I mentioned how I have never even seen a picture of my maternal grandparents.  I doubt I'll ever get to see my Greek grandfather, Peter Nicholas, but last night Martin graced me with a photo of my Portugese grandmother, Mary Serrao (1882-1931), and here she is...

I  think she is rather stunning and modern in her look.  She has the same pin straight hair as my mom had.  I see my mother in her face.  That twinkling in the eyes.  I'm so happy to finally see her!

ch-ch-ch-changes

Already I feel myself changing due to this new diagnosis of my physical being.   Not so much the changes going on inside the body, but the resultant changes in my heart and mind.
I feel an increased strength, oddly enough, despite the most devastating news of my life.
It is a feeling of "Ah yes, this is MY life, and I control it the way I want to, not the way others may think I should.  I don't walk in anybody else's shoes, and I give no permission to try on mine.
The initial poignant revelation is that I will take no one's shit. Not that there are many folks that even irk me this way.  I just know, though, that if someone does, they will be hearing from me, and straightened out.
One small instance comes to mind.  Talking on the phone today with my therapist, Alice, she asked how I am.  I said "Pretty good."  Well, she was on that phrase awful quickly, questioning "What does that mean?"   Well duh, it means exactly what I am saying... Pretty good....  not great, but not bad either.  I don't talk in riddles, I am quite straight forward... and to read me as if I am hiding something, or not laying my cards on the table, is to sort of insult me.  So listen to me, and take what I say at face value.  That is the most respectful thing you can do for me.
Perhaps, for me, being misunderstood is a sore point, as I try to be clear and honest in my expression of myself.
There is also this stronger wisdom of others emerging within me, so early in this new journey.  The fact that just about everybody has their own row to hoe, and our lives are no more hard or easy in comparison to anyone else's.  We can/should only encourage each other to live as well as we can despite troubled times or decline of health, etc. 
There is always a well of something "other" that we can haul up when we really need to.  If you don't have strength of body, maybe you can haul up strength of mind to help balance the deficit.  Or strength of love. That's a really strong balancing agent, and of course balance is what good health is ultimately about.
Is my spirituality changing?  I wouldn't say that.  It's breathing... the way it has been my whole life... sometimes taking deeper breathes than other times.  I "believe" in a multi-faceted way, which I think has been a part of who I am since I was probably seven years old.  Nature has always been my touchstone, and no doubt trumps all other spiritual/religious learnings throughout my life, including my Catholic upbringing, which was not strict at all, by the way.  Some of my ways of thinking are considered pagan, of course... which, to many, would appear to be in direct conflict with the idea of God/Christ.  But to me, all these things blend nicely within myself... one nurturing the other, to create my own peace.  That's good enough for me.
There is a bit of selfishness that is emerging now, too.  I guess that's to be expected. I'm just aware that I need to conserve my efforts.  If my mom were still alive, for instance, I wouldn't be able to help her like I did for so many years.  That was evident during the last year or so of her life, after I got the cancer and the double mastectomy, which put an end to me being able to lift and transfer her.  This is a bit different, though, now.  It's beyond a physical thing... it is much more psychic, so to speak.  A psychic selfishness, maybe.  It is not that I am unable to "give" to others.. I can both give and receive love, kindness, good humor, etc.  It's more an intuitive knowing not to give in ways which might deplete me in some aspect.
For the most part I don't worry myself about too much of that.  I don't associate with a lot of people or personalities that might be in conflict to mine.  My family members and friends are small in number, but great in substance, and operate on a basis that has no room or need for bullshit.  That's a blessing.
So, these changes I speak of, are elusive, at best, and very new.  I can feel it, though.  It is a shift in being, which is a very powerful thing.  How it develops through time will be interesting to see.  I will try my best to stay attuned to it.