send in the clowns

Been a while since I've checked in here,  so it's about time.

Its been a roller coaster ride, I guess you'd say.  Some days I'm just about ready to call an ambulance to take me to the ER, on other days, I'm feeling a bit stronger and positive.  Often times I'm somewhere in between.

Me and Evie will spend Christmas time and New Year's Eve together, which is great... thank God for her in my life... But still, I miss my family very much, and not being with them, especially on Christmas Eve, just sucks.  I just can't make that stairway to Melissa's apartment, and no one comes here, so family time just isn't happening.

Right now I can hardly remember the last time I went out.  I guess it was some doctor's appointment, and proved to be a very hard time just getting there and back.

The home-care people from my insurance company set me up with a pcp visit at home so I could get my prescriptions mostly.  That was all well and good, but I told him how I really needed a motorized wheelchair or scooter to help me get around.  I was under the impression that one's pcp sends in the prescription for that, but this guy told me he couldn't do that.  What the hell?  He could get me a cane, big whoop.  I can only walk so far without getting short of breath.. Maybe half a block if I'm lucky.  A standard wheelchair wouldn't do me any good either, because the exertion from pushing it myself would also hinder my breathing.  I just don't understand.  I'm not sure who can help me with this, either.  Having suffered with depression for the past twenty-five years or so, I'm surprised I haven't jumped into the Atlantic at this point.  But death is not something I'm in any hurry to get to... hell, just the opposite.

To say I have cabin-fever would be a gross understatement.

Some people in my life have started to say "good-bye" to me.  Two people in particular.  One being an online friend, the other being a dear old friend of mine.  I guess they want to tell me what I mean to them while I'm still alive.  It's pretty weird, though, and I never imagined such a thing happening.  A part of me is touched by the sentiment.  Another part of me just wants to say "Hey stop!  I'm not going anywhere any time soon."   But who really knows?

I remember getting mad at my mom because she had signed DNR (do not resuscitate) papers the last time she was in the hospital.  Now I  understand a bit better, and have even signed those papers myself.  I just didn't want to face that reality with my mom.  For myself, it's a little easier.  No walk in the park, though.

I keep pretty crazy hours.  3am now, and I had planned on going to sleep, but here I am, back at the computer.  I get very congested if I lay down for too long, and waking up unable to breathe well is very scary, so I am always putting it off until I am literally falling out while sitting up.

As much as it hurts not to have my mom around anymore, I am glad she doesn't have to live through watching me go through this. It would have made her so sad.  Although I believe that she is watching me from above, I also believe that those who have passed on don't have any value judgement concerning those of us who are alive. That is, she knows what's going on but does not view it as good or bad... she just knows, and that is good enough.  I sure do miss her, though.  I miss my dad, too, of course, but its been over 25 years that he's gone now, so I'm a bit more used to it, I guess you'd say.  Mom will be gone just two years this coming February, so it's still pretty new, really.

So, that's about it.

I wish everyone out there a very Merry Christmas, and pray that 2017 brings only good stuff into your lives.

Peace.

nothing good

Went to the cancer center the day before yesterday, and had a very hard time of it.  Legs and feet are so swollen I couldn't fit in my shoes.  Can barely walk, and used a wheelchair once I got to the center.  Was supposed to get a new pain control regime prescribed for me, but the woman (dr?) I met with had no authority to  order methadone, which, in conjunction with the oxycodone, helped me when I was in the hospital.  How ridiculous that I can't get something that helped me.  So sick of everything now.  I'm at the end of my rope, and rapidly losing hope.  Not feeling so "brave" anymore.  What is there to be brave about anyway.
Had major trouble getting in the car because I can't lift my legs very well.  Won't be able to go to Melissa's for Thanksgiving, since there's a long stairway to her apartment.

seen better days

The day before yesterday, I was discharged from Lutheran Medical Center, after a 5 day stay.  Didn't go to Maimonides as I usually do, but the EMS guy who drove the ambulance said it was crazy busy there.
Went in mainly because of my breathing, and generally was having a lot of pain.
Didn't really recover there... I am wheezing badly still when I walk a bit.  Got several different inhalers prescribed, and just hope they start helping.
A palliative care team saw me, and after much conversation we all agreed on treatment with Methadone started at a very light dose of 10mg twice a day.   It was soon changed to 10mg 3X a day, but they don't send you home with it, and I need to see a palliative care team at the cancer center in order to get it.  Hoping I can get there next week.  Oxycodone 20mg every 4 hours continues with everything.
My legs are very tingly weak tight and numbish.  I fell in the early morning hours of the day I was discharged after getting out of bed to  use the bathroom.  Just couldn't support myself.  Hit my head against my room mate's bed, and had to get a CAT scan (negative).
So, upon discharge I still didn't have great breathing capacity....had not ambulated at all during my stay, except to use the bathroom; had a fall. and could barely walk.
Signed DNR (do not resuscitate) papers when I was in there.  After much discussion of possible outcomes, it seemed the thing to do.
Came home to my modem on the fritz and no internet access (have since come to evie's to stay for at least the night).
And Trump is president-elect, the ultimate horror.
And so it goes...

missing my mom

I am missing my mom so much.  I just want to talk to her.  Not about anything so deep or profound.... maybe just talk about television shows we both watched, and what we thought of them.  She would say "watch that tonight, and we'll talk about it, tomorrow."  Oh, how I miss such simple pleasures.
Today I bought Sugar Wafer cookies, and some Halvah.  She loved both of these sweet treats.  What a sweet tooth she had.  How fitting that she would marry a baker, and always have some cake or cookies available for dessert.  Mom's meal wasn't complete unless it included dessert.
Years ago we had the finer candy stores in the neighborhood.  Places like Loft's, and Baricini's.  It was from these places that she would buy her beloved Truffles, and Parlays.  She would "hide" them from us in hopes of having them last longer.  But she always hid them in the same spot!...  in the china cabinet.  Of course we'd find them.
She was never fat, though.  In her twenties, she only weighed about 105 pounds, and was quite slim.  In her 30's she got a little chunky after my dad bought the bakery, and they were living high on the hog.  But during the next decade, in her 40's, she got Multiple Sclerosis, and would lose the weight she had gained.
I miss her laugh, and how well she could read me, no matter what.
She would be shocked and dismayed at what I am going through these days, though.  But it sure would be a comfort to have her at this time.
This Sugar Wafer's for you, mom.   I love you, and miss you always.

just another day

Time to check in, I guess.
It hasn't been the best of times over the past month.  No great changes, really, but bad bouts of shortness of breath/rapid breathing, etc., which just does me in, and is so scary.
Haven't seen my doctor in a while, and am overdue for my injections.   I have an appointment this coming monday, and I just hope I can make it.  I think Evie might go with me, and that would help.
Ran out of my pain meds a few days ago, and it took three days to reach someone to finally get a script called into the pharmacy.  Then the pharmacy calls me saying it's five days too early for this prescription to be filled, and they want to know why.  Duh, why do you think?  I don't know how it worked out, but I did end up getting the meds today.  Thank goodness, because the level of pain was really affecting my breathing.  I didn't realize the correlation between the pain and the breathing until now really.  When the meds started kicking in, my breathing improved considerably.  It is no doubt that crushing feeling I get in my chest area that affects it the most. 
Hard to believe it is mid-October already.  Great to be past the summer.  Its been kind of chilly in the low 50's, and even in the 40's during the night.  I love it.  Nothing better than being cozy under the blankets.
I miss taking pictures.    I've hardly taken any this year.  I pray I can make it up the stairs to Melissa's on Thanksgiving.  At least I will get some family and food pics.  Same goes for Christmas.  These holidays will be upon us before you know it.

dream disturbance

I get so troubled by dreams when I try to sleep, that I am often awakened before I've even had an hour of shut-eye.  This sucks, as I often put off sleep as long as I can, and I will sit here, falling out, before I allow myself to submit to the desire.

Tonight it was my mother being overly worried about the amount of time I spend on the computer, and complaining that my phone line is tied up during all that time.  I woke up, and sat in bed, still continuing a conversation with her in my head, explaining why I spend so much time here, until it occurs to me that she is dead, and I haven't had a "dial-up" connection tying up the phone line in oh so many years.

And, of course, I go to my computer.

I think it is the oral chemo med that causes so much dream disturbance.  I take it for 21 days, then have a 7 day break before beginning the cycle again, and yesterday was my restart date. This drug really runs the gamut of side effects.  They don't seem to subside either, as side effects often do after a couple of weeks or so.  Been taking it about 4 months now.

I think there's a good chance I may have broken a rib recently.  Pathological breaks will occur with bone metastasis without actually sustaining any type of injury.  My bone mets specifically affects my spine and ribs.  Right sided rib pain has increased significantly, and movement and deep breaths exacerbates it.  The area is tender to the touch.  Quite similar to when I actually broke a rib after fainting and falling flat on my back onto the hardwood floor.  I see my oncologist in a couple of days, and I suppose she will send me for x-rays.

Got a call from a lawyer's office today about owing over $900 to Maimonides hospital for various doctor's visits dating back as far as 2010 (??).  Had a call some months ago about owing some $2300 for hospital stays and procedures.  They always want to set up a payment plan, and I always just say no, can't do it.  Can't get blood from a rock, folks... sorry 'bout that.

Guess I'll take another shot at sleeping.

Big Brother 18

Been watching Big Brother three nights a week, as I have during the summer season for the past eighteen years.  When I started watching, I was in my forties, and most of the "houseguests" are usually in their twenties or thirties, with an odd 40-something now and then, maybe even a 50.  Of course, the older I get, the younger they get.  I also subscribe to the live feeds (cameras are on these people 24/7), and I can tune in any time of day or night to see what's going on with them.  This gives a better picture of them, beyond what is broadcast on prime time.
This season, they all seem unsually young, generally 23-27, and relating to them, on almost any level, is virtually impossible... Except for maybe closeness with family, and stuff like that, the division I feel with most of them is tremendous.
There are some potentially good minds in the house, but these people need some work, that's for sure.  Paul comes from money (they did a segment where his mom and dad were interviewed in thier mansion like home), and has a tendency to stress how unimportant the money is to him (winner gets $500K).  I can see how he prides himself on the unimportance of money.  That is a positive thing of course, but I can say, without fear of contradiction, that Paul has never gone hungry, without more than a pitcher of water in the fridge (assuming the electricity didn't get turned off).  Take a walk there, Paul, and then tell me how unimportant money is.  He has a small clothing company (think black with skulls), and frequents Europe
Michelle, is heavily into social media, and seems to see this as a career path.  She needs a lot of reassurance, and because of that, she doens't seem to have a good sense of self. Wouldn't trust her as far as I could throw her.
Victor is quite young, 23, I think, and laughs a lot, and likes to make people laugh.  He's Puerto Rican, and is real easy on the eyes.  He seems to be the most regular guy of them all.  I'd like to see him win, but odds are that he'll be "evicted" soon.
They ALL use the word "literally" every other sentence, it seems.  There is rarely a valid reason for using the word to begin with, and why they interject it anywhere and everywhere is just beyond me.
A lot them curse incessantly.
They use the word "bone" to indicate sex.  Yea, that's sexy.  Geez.
The girls spend half the day putting on make-up and doing their hair.
The boys pump iron.
I think they call this generation, The Millennials
God help them.

Wonderland coloring pages

Here are some quick shots of pages I colored in the Wonderland coloring book.  My apologies for the blurriness; I didn't spend much time setting these up.  Some pictures covered both pages, but weren't photographed that way.  Click on any pic to view as a clickable slideshow.

I used Pentel Arts Fine-Point Color Markers.

oh to be in Saranac Lake

I check the weather at the online site called Weather Underground.  Along with current and future forecasts, there is an area that shows the state lows and highs.  Invariably, the highs will be  close to home, like New York City, Queens, Yonkers, etc.  The lowest of lows is almost always at Saranac Lake.  Yesterday's high was in NYC, at 91 degrees, and the low at Saranac Lake was 50 degrees.  Major difference there.
I've been to Saranac Lake once, when I was doing audits on medical offices throughout New York State. It is located not far below the Canadian border, amidst the Adirondack Mountains, I believe. The doctor's office was in the middle of nowhere, as most things seemed to be in that area.  It was run by a Chinese doctor and his wife.  Much of their medical equipment was quite old fashioned, including an otoscope made of wood.  The doctor and his wife were sweet and soft-spoken, their demeanor reflective of the mellow surroundings of Saranac Lake.
This is the kind of easy and laid back type of place I wouldn't mind living in.  I would certainly enjoy the weather... even in winter, when the lows are often in single digits.
Nevertheless, I live in Brooklyn, where the temps are most often higher than New York City temps which are recorded in Central Park.
Chances are I will spend the rest of my life in Brooklyn... the past being a fairly good indicator of the future.
If I owned a car, I might actually consider moving upstate, but even if I did, it would mean moving away from my sister/niece and great nephew, which would probaly be too hard to do.  I imagine Evie would consider moving with me, which is why I didn't name her among people I'd be leaving behind.  I bet we could rent a house for half the price of what I'm paying for a one-bedroom apartment.
The heat was terribly oppressive yesterday, feeling a lot worse than the readings of low 90's.  The air was just thick with the heat.
I had gone to the cancer center, where I had to get an IV calcium infusion, before getting the injection that aides my bone strength.  It was so cold at the center that I had to be covered with a blanket while getting the infusion.  I am not complaining.
When I went back outside, the heat came as a shock after spending hours of shivering in the center.
Luckily, I've been able to use my air conditioner without any more leaking.  Mark Durfee, fellow poet and blogger (The Walking Man, http://themanwhowalksalonewalksfaster.blogspot.com/) had suggested to me that I raise the temperature setting, and lower the energy mode, to ward off the leaking problem, which thankfully, it did.  Just about saved my life, considering the heatwaves we've been having.  Bless you, Mark!

Book Review: Understanding Exposure (How to shoot great photographs with any camera) by Brian Peterson, 4th edition

Having been a photographer for over 35 years, I am pretty familiar with the Exposure Triangle, and how to use it, but it is always good to have a nice reference book at hand to inspire and encourage me to use my knowledge more effectively.
I enjoy all the varied photographs showing the same subject at different exposures, and how this can greatly effect the outcome.
I very much enjoyed the section on Light.  It included:  the best light, frontlight, overcast frontlight, sidelight, and backlight.  Again, giving good examples of each.  
Also, the section on shutter speed, giving good examples and techniques for freezing motion, and implying motion.
I have never been one for using filters, but recently acquired some polarizing and neutral density filters, so the Special Techniques section, outlining these exact filters, was quite welcome.
Despite my many years of photography, I have never quite mastered the art of using electronic flash.  There's a very comprehensive section on this, and I will no doubt refer to it many times in my quest for understanding it.
This is a good photography reference tool for beginners and advanced photographers as well.
For more information, click on these links:  

• More Info
• Author Bio

I received this book from Blogging for Books in return for publishing an honest review.

on Becoming a Bird, despite being Earth-bound

Becoming a Bird


Broken wings lay against your breastbone
digging deep to the other side
A visceral attachment
Seemingly significant, yet still
you cannot fly.

Iridescent feathers lay flat against your cheekbones
Your eyes are separated by yet another,
You are cross-eyed, two by two,
Visually aware of elemental differences
that further define the yin and the yang
You can see.

Playing hopscotch with frogs
defines your personality
You like to laugh,
but you will not win.

Everything is in the trees,
and on the edges of clouds and
deep hanging fog.

But all you need is a sidewalk
and chalk
if you want to play.

wonder when it started

Just two years ago, on summer vacation with my sister, niece, and great-nephew, I was still pretty active.  The only real discomfort I felt at the time was from the breast expanders I had in me since the double mastectomy.
I was able to take a running start to jump into the pool, and did a great deal of walking the day we went to Hershey Park.

Even last year, I was still doing pretty good when we went away in the summer. That was several months after the reconstruction.  I was able to climb the ladder to use the pool slide, and spent many hours playing around in the water.

There was just one day, I remember, when I was in a lot of pain, and spent most of the day in bed.  Other than that, I was doing fairly well, considering.
It was soon after the reconstruction reversal this year, in March, that I started to really go downhill.  Of course, the pain (mostly in my abdominal area) had been persistent for fourteen months.  But then the breathing problems really came to the forefront, which of course precipitated that first hospital admission, where the diagnosis of breast cancer metastasis was made.
Prior to the admission, I'd started having bad leg pain, which I kind of chalked up to on and off leg pains I'd had most of my life.  Since I was a kid, I'd suffered with bad knee pains at various times in my life, and though this pain felt more severe, and involved my entire leg, not just the knees, I didn't think there was something more ominous going on.  Little did I know that I was now experiencing painful metastatic bone pain.
Had I not gone to the hospital because of my breathing problem, there's no telling how long I'd remain undiagnosed.
I wonder when the mets started. 
I had the PET scan back in April or May of 2014, after chemo was completed, but before radiation started, and that's when they told me I was cancer free.  So, sometime within the next two years, the metastasis developed.
I have been on some kind of pain control for the past year and a half, now taking oxycodone every 4-6 hours.  Sometimes I try to do without it for a few more hours, but pain comes back full force, unfortunately.
Recently my legs have started to get very numb and painful soon after standing up.  Feels like a thousand rubber bands gradually tightening around my legs from my feet to my knees.  Almost makes it impossible to walk.
Worse than the pain is the breathing problems, which don't improve much at all.  I can't walk more than half a block without stopping to rest.  This keeps me more or less homebound.
Yesterday, I went to the cancer center to get the injection for my bones.  Turns out my calcium was low again, despite taking a calcium pill and calcium carbonate oral suspension every eight hours since being discharged from the hospital last month... so, I was unable to get the injection.
Next week I have to go for an IV calcium infusion, which will take two to three hours, hopefully improving my levels, so I can continue with the injections.
I worry about the effects on my heart, since the low calcium caused me to have EKG changes.
I don't understand why my calcium is so low when I'm taking so much stuff to regulate it, and haven't had one of those injections (which causes the levels to drop) in about two months.
What the fuck body?  Why aren't you cooperating?

what's been happening

Well, it's August now, so summer is moving on, thank God.  Another couple of months, and blessed Autumn will come in.  None too soon for me.
A couple of days ago, my superintendent came to my apartment saying there was water pouring down into the apartment below me, so apparently it was my problem.  After he left, I discovered that my bedroom air conditioner was leaking badly from the bottom, causing a virtual flood that I never even noticed.  Cleaned it all up, and shut down the a.c., letting the super know I'd solved the problem.
Unfortunately, I have an a.c. that is useless to me now, and it's only 3 years old.  The one in the living room worked for nearly 18 years, before dying this year, the compressor failing to kick in.  I use the a.c.'s mainly because they help me breathe better in the hot and humid weather, and we've been having heat wave after heatwave lately.  Now I am out of luck, unable to afford fixing the newer one, or buying a new one, for that matter.  The bad heatwaves seem to have subsided for the time being, and I just hope I can endure the rest of the summer with the one fan that I have.

Got these things called knitted knockers for free from a site online (knittedknockers.org). 

They are knitted with a fiberfilling, and meant to be used in lieu of a breast prothesis.  Says they can be worn with any bra.  I threw out all of my bras after I had the double mastectomy, so  last night I sent for an inexpensive one so I can try these things out.  Hope they work; I would like to have some semblence of breasts when I get dressed, and I've yet to get prosthetic forms, which I know can be heavy and uncomfortable. 

Bought some more Ensure Plus today, since I continue to have a numb mouth with an odd taste, and nothing tastes good or right anymore.  No doctors have really addressed this problem, except to say that it might be caused by my calcium deficiency, and since that was corrected when I was in the hospital, it may just be something I have to live with.  Everything has the same sort of salty, yet somewhat indistinguishable taste.  It truly sucks.

Found out today that I've been approved for Access-A-Ride, which makes me very happy.  I can get transportation from my home to anywhere in the 5 boroughs for the same price as a bus trip.  I spend a fortune on car service to get around, so this will save me a lot of money.

My hair is falling out pretty drastically due to the oral chemo meds.  Unsure if I will go completely bald again, or if it will just get really thin.  If bald patches start up, I will probably just shave it all off again.

I haven't been back to the Cancer Center since getting out of the hospital, mainly because I just haven't felt well enough.  I know I have to get myself together and start getting back there again this week, since I need to get those injections that help my bones and my blood.

Been coloring a lot in the Wonderland coloring book.  Will maybe take some pics of stuff soon to show you.

be it ever so humble

There's no place like home.

Was finally discharged from the hospital tonight after thirteen long and trying days.

This certainly was an unexpected turn of events in my life.  Makes one reflect upon the impermanence of it all, and how things can change so suddenly, on a dime.

Having stage 4 metastatic breast cancer is no joke.  One's life is now so consumed by constant treatment of the disease, and even treatments of the treatments, if you can fathom that.  Test this, test that, monitor this, monitor that.  Deal with the pain.  Deal with not being at all what you once were.

Things are simply different.... I'm different, and I perceive a different world/reality. 

It is a very lonesome reality.  No matter what support you may have, this is essentially a very private journey.

ongoing

These hospital admissions go from one thing to another.   I am still here.  My breathing improved, but dangerously low calcium levels caused EKG changes, causing me to stay.
There is an injection I get, once a month, at the cancer center, to help with the bone loss due to the bone metastasis.  This seems to be what caused the calcium disruption.
I had to have a central PICC line placed in my neck the other day for needed IV infusions, because I have absolutely no viable IV access in my arm. Being one arm is compromised by lymphedema, and unable to be used, I had half the access to begin with.
Placing the PICC line was painful, but necessary.
On top of all this, I haven't been able to move my bowels in eleven days, and they won't discharge me until that happens.  I have received just about every drug and procedure you could think of to facilitate this, but to no avail.  Tomorrow they will introduce a rectal tube to see if that helps.  It's really out of line now.
One night, the cramping pain became so severe that my blood pressure went out of control, going over 202/120.  Vomited throughout the night, and was just so miserable.
Damn, I just want to go home, and be done with this madness.

another hospital admission

Another episode with me admitted to the hospital, for COPD exacerbation.

Last week I had done an Albuterol Sulfate nebulizer treatment at home, looking for some relief from labored breathing.   On the contrary, what ensued was one of the worst episodes of shortness of breath that I've ever experienced.   Barely able to take in a breath, I felt sure I could die at any second, or at the very least, have a heart attack.

I was able to type out a couple of words on the computer to get Evie to come over asap, and just be with me.  When I was able to draw in a breath, I used my rescue inhaler, and my rapid fire breathing started to ease up.  Weird thing is, the rescue inhaler is also albuterol, but yields a totally different effect.

Unable to walk even 5-10 feet without losing my breath, I spent the next day and night in bed, putting off going to the ER, but called 911 by Thursday, June 30th, and was taken by ambulance to Maimonides Medical Center.

After spending 8 hours in the emergency room, I was admitted to an Oncology floor for observation and treatment.  Was really thankful that it wasn't like my last trip to the ER, when I spent 29 hours there before getting a bed on a medical floor.

They treated me with another nebulizer treatment... this time something other than the albuterol, but I can't recall the name of what it was.  Anyway, I had a bad response again...  this time having audible wheezing, and painful chest tightness.   I don't know what it is about these nebulizer treatments that have me reacting so poorly, but I now refuse them, and won't ever do another one.  Only the rescue inhaler works for me.

I'm also being treated with 4+ liters of O2, and IV Steroids, 40 mg., 3X a day.

Tomorrow with be my fifth day here.  I haven't yet tried taking a walk in the hall, but will attempt that.  I've been able to walk to and from the bathroom without losing my breath.  I'm improving slowly, and can maybe be discharged in another day or two.

At one point during my stay, I was asked some sensitive questions about whether I would consent to intubation and/or chest compressions if an emergency requiring that were to arise.  Being the likely alternative to these things would be death, I did agree to both.  They said the chances of being extubated would be slim, and a trach would probably have to be done.  That whole conversation bummed the hell out of me, but I knew it had to be discussed.  I'm not exactly ready to consent to death just now, you know?

Pretty sure I will go home with supplemental oxygen this time, and probably continue on a course of oral prednisone.

It has been a pretty scary time, but I am getting through it as best I can.

Some really hot and humid weather is expected to move in very shortly.  That is never good for my breathing, so I will stay quite still and close to the air conditioner.  I have an appointment at the cancer center in three days, but will no doubt have to reschedule that.

My sister, and Melissa and Logan will be going on a short summer vacation soon, and I feel so bad I can't be going with them this time.  I will surely miss that.  I think Logan's Godmother, Kim, will be joining them, too.  Wish I could go, but this just isn't my time.

Hoping I can get back on my feet real soon.

summertime

It is not yet summer, but I have been using the air conditioner quite often these days anyway.  I really can't tolerate any level of heat.  It hinders my ability to breathe well, and just puts me in a bad mood.  If I am able to swim in a pool or ocean, then I do not mind it so much, and can even enjoy laying out in the sun, if I know that kind of refreshing relief is nearby.  But, generally speaking, I hate the summertime.
The other seasons are wonderful; each in their own way.
There is that welcome relief of autumn, when the weather beckons you to put on a jacket or sweatshirt.  The air is dry and crisp, and there is that lovely display of colorful trees,  and dried leaves crunching under your footsteps.
Winter is most spectacular with its howling winds, and flurries of snow.  A fierce blizzard can keep you holed up inside, but there is nothing like the peaceful silence of an insulating snowfall.
Spring is welcoming with its newly blossomed crocus, and the sprouting of pale green buds on the trees.
I enjoy living in a place where all four seasons are available to me.  Enjoying three out of the four of them isn't too bad.
Despite my dislike of summer, I have probably had some of my best times during that season, since it is typically vacation time.
Hiking in the mountains of Cuyamaca (in San Diego), or camping out in upstate New York.  Going cross country with Tree and Melis, and enjoying oh so many beach days in my youth.
I went to Finland (Lapland) during the spring/summer, and experienced sunlight virtually all day and night during that time.  Wish I could've experienced it during the dark days of winter, though.
I was just looking at some pictures I took this past winter, after a snowfall.  Those days cannot come soon enough, if you ask me.
  I have hardly been outside at all this year, especially since April when my breathing became so bad, and body pain increased.  It's a good thing I'm such a home body type, or I'd surely be going stir crazy by now.  I would like to take a nice walk, but just going from one room to another can render me short of breath.  I have to be careful of that, lest I use up my rescue inhaler before I can get another.
When Melissa was little I would often sing the song, Summertime, to her, in a sort of operatic voice that would just crack her up.  Great song.

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.

just rambling here

I keep thinking I need to call my mom and let her know I'm home.  The feeling to call my mom has been strong ever since she died.  My sister feels it, too.  We communicated with her, daily, for the most part over the phone.
It's a feeling as if something will stay incomplete unless you "let her know".
Of course, she does.
I imagine her observing evenly, having become the Owl she always was.  Observing the movements of my heart and mind, but having no judgement, no need to assign value, either good or bad... just observation, and an accompanying peace.
"I see her,"  Owl says.
And that, in part, gives me some peace.
My birthday in three days.  I will be sixty-two.  In light of recent events, this number is somewhat less ordinary, or even meaningless.  Now it is the number of a significant life event that threatens to take away one's accumulation of numbers.   If you get my drift.
The woman in the bed next to me looked to me like she was maybe 80.  I soon learned that she was 67.  She was ravaged by cancer, and it was robbing her of her numbers. 
I don't know how many numbers I'll have to give in, if any, and I don't care to know.  Makes no never mind to me.
When the time comes, Wolf will howl beneath a pearly moon, while Owl hoots nearby.  True essence emerging.  Numbers will be obsolete.
Today I thought about extraordinary encounters I've had throughout my life, with higher consciousness...  although "higher" isn't quite the right word for me.  It is not so much higher or lower as it is Open or Shut.   The more you open, the more levels that can be experienced.  I think this is why I experienced many things in my teens, 20's, and 30's...  we are less jaded by the world, so more open.  Life and its trials and tribulations through the years can often close down a lot of expanded consciousness.... at least that has been my experience.
Though in no chronological order, some of the things I've gained familiarity with, first hand, are:
astral travel
shamanic journeying, power/spirit animal retrieval
encounters of the 3rd kind
pressence of spirit beings under varying circumstances
At this point in my life now, I am suddenly feeling closer to that openess which allows such energies to make themselves known.
Time will tell, and I will, too, if stuff starts revealing itself.
You never know what, either.
Way back when, in Medicine Wheel Gathering days, when Sun Bear was still alive, I remember talking to Grey Antelope about Spirit animals and such.  I was thinking maybe he could tell me what mine was, and I believe I hinted that it just had to be a bird of some sort.  Well Grey Antelope never did tell me my power animal.  Wolf came to me clearly in lucid dreams, over a course of time, until I was "given" the name, Running Wolf.  Not nearly a bird after all!
Just rambling here.

Dread the Spread

For the past month I've had a very bad time with my asthma and/or COPD.  I depleted my rescue inhaler in les than 3 weeks, and the insurance denies an early refill, leaving me with no relief, and an inability to get even from one room to another without nearly passing out from shortness of breath.
On Monday, the 25th of April, it had reached critical peak, and after speaking to my PCP, I called an ambulance and went to the ER.  What followed was nebulizer treatments, steroids, O2, etc., and 29 hours in the ER before being able to secure a bed and be admitted.
Because my breathing was not improved with treatments, it was decided they'd do a CAT scan of my lungs to check for a possible blood clot, since I had recently had additional surgery, and it was indeed a possibility.
I was still in the ER at this time... I had been there 15 hours at this point, when a new doctor came and started discussing my history of breast cancer.
Then, came the shock of my life.  The CAT scan had revealed that the cancer had metastasized to the lymphangatic system in my abdomen, and to my bones -- specifically to my thoracic vertebrae. 
The doctor apologized for giving me this lousy news while alone in the ER.
I immediately secured a phone and called my sister (at 3am), who got so scared at the phone ringing at that time that she though someone was calling to say I had died.
I just couldn't tolerate being alone for too long with this devastating news.
Later on, Melissa came by as well, while another doctor was talking to me.  I saw her but knew I couldn't acknowledge her presence just yet, or both of us would break down.  After the doc left, I opened my arms to receive her, and we both held each other, shedding many tears.  It kills me to see her cry, and even now, my tears flow just thinking about it.  Our love in deep and unique.  She truly feels me.
Anyhow, after 29 long hours in the ER, I finally got a bed on the floor, which is where I've been now for 3 days.  Writing this on paper until I can transcribe it to my computer.
Earlier this afternoon, I had another CAT scan of my addomen and pelvis, and a full body bone scan.  Those results will probably come tomorrow.
The breathing problem is very slowly improving, and is, in most part, a separate issue from the cancer developments.
Some of the oncologists have said I will probably have to undergo additonaly chemo and radiation.  Right now I'm not too certain of my prognosis.  The oncology team will talk to me some more tomorrow.
I hope I can go home soon.

Thursday now.

Still in hospitaol, and not leaving today.  Been running a temp all night.  Had blood cultures done this a.m.  Results tomorrow.  Still pretty hard to breathe.

CAT scan showed cancer in some abdominal lymph nodes, and lung as well.  It's hard to comprehend all the info sometimes.  Still waiting to hear on the bone scan results.

In any event, I will need either a lung or bone biopsy, I believe... haven't heard which just yet.  Neither sounds like fun.

My veins are a disaster, and I've endured literally hours of being poked, trying to get IV access, draw blood, etc.  Don't know if I can handle one more attempt at this, truthfully.

So... some updated info.  My lungs have some small specks (7mm) of metastasis.  Also, my ribs and spine have been affected.  Tomorrow morning I will be going for a bone biopsy, which is a painful procedure that I certainly don't look forward to at all.

Friday, 4/29/16

So, I was NPO (nothing by mouth) from midnight last night, in preparation for the bone biopsy come morning

Half expected to be taken by 9am for the biopsy.  Breakfast time came and went without me partaking.  Then, lunch came and went.

By around 2pm I learned that the interventional radiology department was backed up with a couple of emergency cases, but that I could expect to get my biopsy by 3.  Moments later it was decided that because my blood pressure had been running high, the procedure would be cancelled, perhaps until Sunday.  Maimo is a Jewish institution, so nothing is done on Saturdays, but Sundays are an option.

I would be getting either a rib or spinal biopsy, both painful procedures, each with its own risks.  The rib biopsy risk is mainly pneum-thorax, which would result in a chest tube being placed.  A spinal biopsy is a bit more ominous in terms of risk, as paralysis can result.  Seems they will opt for the rib...let's hope so.

Saw my friends Amelia and Jeff last night.  That was a real good visit.  Besides love and good conversation, they brought me a lovely miniature white orchid plant, and a pendant of a Hindu goddess, who is a slayer of obstacles, to aide in my healing.

My sister came again today.  She is running around much too much, though, and I think it's time she stayed home and got some rest.

Also, Alice, my therapist from the mental health center, came by to visit , bringing good tidings from many folks there.

I haven't seen Evie, but I know she is right in my corner, praying for me, and she is taking care of my cat, Morrison, at home.  I miss hanging out with her.

Saw my medical oncologist, Dr Burdette-Radoux, who assures me there are good treatments to be had for what I am going through. 

Sounds like I will be able to be treated with oral medications, and not necessarily more chemo/radiation.  That's really good to hear. 

Everything will be more definitive after getting the bone biopsy.

I miss my computer, and could use a nice warm shower, but I am mostly comfortable here.  Wishing desperately for a cigarette, and will no doubt partake once I am discharged.  A good fat joint will be in order, as well.

So, I've got another 3 days here, at least, and maybe even more, depending how the biopsy goes.  My breathing status is much improved, and getting better every day

4am Saturday morning

Having a hard time sleeping through the night, despite a mix of morphine and Xanax around midnight.  Really want a cigarette.

Saturday night

I won't be getting the biopsy done until Monday, because the pathologist needs to be aournd.  Hopefully this doesn't extend the stay any, and I can go home by Tuesday.  

Evie wants me to stay with her when I am discharged, and that sounds good to me.  She's coming to see me tomorrow, which is great.  She'll be bringing my Surface Pro2 with her, so I'll finally be able to go online after so long away.

Well, as you can see, I am online again.  So good to see Evie, and she spent a few hours here.

I know this was a ridiculous amount to read, not sure many of you made it through, but as always, I like to keep an account of what is going on in my life.

I think I am doing fairly well on an emotional/mental and spiritual level, and will continue to try to do so.

Thank you all for your prayers and good thoughts.