Thursday, April 27, 2017

The Cancer Chronicles, continued

barefoot doctor

pain creeps up like an angry cat
ready to rip your throat out
should you make the  wrong move.

During sleep 
I opt for dreams
instead of medication
and wake with aching bones
untouched by the morning dose.

Combing crystals through the air
I collect and discard
the sudden mud
of my aura,  and

Tuning forks sing their song
into my flesh
dancing with my bones
To bring peace

Sometimes I boogie,
sometimes I don't

I pick and choose my medicine.

Crystals to clear and nurture,
Power songs to weave a circle
where I will sit for a moment
In time
transforming energy,
redirecting qi.

But this metastatic cancer
is a harsh mistress
Often refusing to budge
with either Oriental recipes
or Occidental masks.

Sometimes things work, bringing
relief, or tolerance, and
letting me believe in magic
once again.

Thursday, April 13, 2017

The Cancer Chronicles, part one

Sunday Morning (a day in the life)

The radiator spews heat and
there is no cool  breeze
coming through the window.

Shifting between time and days
I am unable to make sense
of the days,
Having been trapped like a bug
in amber

The bed sticks to my thighs
as if encasing me
in the slow drip of time,
A thick gush of resin
suffocating me.

No blue light of dawn
wakes me gently,
But rough transitions
of light to dark
with no twilight song
to welcome me

No pink tides across the sky
No violet hues or powder blues.

My legs stiffen and swell.
My movements stiffen and swell.
There is no release.

It is like glass cracking
beneath my skin
Creating a mosaic of flesh.

The hair on my body recedes
like an old woman
balding from head to toe,
A rapid demise of youth,
now just a memory.

Re-entry, Stage 4

Here is the prisoner of Cancer
unable to free herself
despite good behavior, and a
plea for pardons
sent up on the voices of prayer
by family and friends, and
even the most innocent of children.

We do not bend over and spread
our ass cheeks in search of contraband
But we are naked and exposed
Standing helpless as
not-so-magic markers
define the areas that will be incised and
Leaving your chest flat and scarred and
seemingly Cancer-free.

And yet
The doors don't open,
the prisoner must return
after months of freedom,
Suddenly unable to defend herself
to even the highest court of God and
all his angels.

The cell grows smaller,
Spaces close in
as disease overtakes the prisoner,
Bit by bit
Encroaching upon her Lungs
with  no space to breathe;
Occupying her bones and
replacing it with pain
Like a punishment
for crimes
She can't remember committing.

Appeals fall on deaf ears,
Bones grow more brittle, breaking
her will to live 
at times, 
in this small box of lies.

"There must be some mistake" she cries.

"No', they say, 'We found new evidence
(of disease)  -  You're a Lifer now,
like it or not  -  Join the others
on Stage 4."

Monday, March 6, 2017

long time no see

Hey folks, long time no see.
I have been without a computer (both my Surface and my desktop are not working since before Christmas... November probably.) for a good long time, and it doesn't look like I will be up for getting repairs any time soon.  Using my friend, Evie's, laptop, now and then, but haven't gotten round to posting anything on my blog in ages.

Very recently, I had a CAT scan, to see if those chemo drugs I've been taking for the past almost-year, have been working to stop the progression of the disease.

Well, the news wasn't good.  The drugs aren't working, and I've developed nodules on my lungs that weren't there before, and a worsening of the bone metastasis.  Definitely not the news I wanted to hear.

Breathing is always very tough, and now I know it is more than just the COPD.          

But life goes on.

I've been going to the Cancer Center  a lot recently, having been unable to do so for a long time...  My legs/feet were numb, and so swollen I couldn't get my shoes on.  I'm now able to get them on, though I'm still quite swollen... And also still numb.  Starting a drug called Gabapentin to help with that.

I'll be starting a new medication regime, since the one I was on wasn't working, and had to be discontinued.
I will have a daily oral hormone pill... anti-estrogen, I believe, and bi-weekly (to become monthly after a few treatments) intramuscular injections (one in each butt cheek) of some other targeting agent.

So, hopefully these new medications will work.

Accepting all positive vibes and prayers, etc.

Stay joyful.

Thursday, December 22, 2016

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.


Thursday, November 17, 2016

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.

Wednesday, November 9, 2016

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...

Saturday, October 22, 2016

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.

Friday, October 14, 2016

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.

Tuesday, September 13, 2016

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.

Wednesday, August 24, 2016

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.