Saturday, April 19, 2014

Abandonment - Rejection

I have intimate knowledge of both subjects, from the beginning of my life. 

My mother abandoned me when I was three days old. Rejected me completely and never nursed me, held me, or otherwise showed interest in me. I was raised by my mother’s mother & father for most of the first 16 years of my life. No more details than that right now.

Throughout my life there’ve been many rejections and more than my share of abandonments; the most recent and last (until now) was the deceitful ending of my 30 year relationship, losing any share of what  we had built together over those 3 decades.

So after 8 years of peace, surrounded by trustworthy folks I suppose I was due for another slap in the face. This from the person who saw me through the breakup, gave me strength and emotional support, accepted the role of executor of my will, emergency contact and medical power of attorney JIC.

Those roles were important to me coming out of a dark period of serious illness when the curtain finally fell on the previous life. I felt safe and comfortable; first knowing that this person had been a nurse, and second that clergy was also part of their list of accomplishments. 

That sense of comfort and serenity was shattered last August when I found myself facing the current illness and close to death.  When the hospital staff called this person at my request this person denied knowing anyone by my last name (which I am sure the staff bungled anyway, they always do), but still, how many people could this person know with the same first name had as emergency contact in such small town, and with a recent history of serious illness? Not many, I’ll wager.

I confronted the person on this and was told the hospital got it all wrong and had no idea who I was by the description. OK.  But, No.  That doesn’t cut it.

It has been 7 months since I’ve heard any word from this person.  No call. No email. No visit. No nothing. So, I composed a short, straightforward note asking if our friendship was over and if so, to please have the courtesy to let me know - and posted it to their FaceBook page.  And Man!  Did I get a response!!!
I have no idea why you posted that hateful note on my FB page - especially since I have sent you two get well cards, sent you a Christmas card, and left at least a few phone messages for you. I even stopped one day at your apartment and knocked on the door. No answer. I simply thought, since I didn't let you know I was coming and did so just on impulse, that you were out and I had missed you. I was happy thinking that at least you weren't confined to your house. Then, I thought perhaps I had said or done - or not done - something to upset you. I thought perhaps you were depressed and did not want to see anyone right now.  I thought you would contact me when you were ready. I had no idea it would be like this. Even so, you have been in my personal prayers. I have removed your angry post from my wall. If you need to contact me, please do so privately. There is no need to spew your anger all over FB. It only makes you look bad. You also have my phone number - cell and home, I believe. If not, here they are again: 973 464 8018 (cell) 302 231 8246 (home). Let me know if and when you'd like me to be in contact.
My note wasn’t hateful or angry, just to the point. I guess it’s all in the perspective of the reader. Here’s the most hurtful - the lying part:
* They’ve never been to my apartment.
* My car is always directly in front of the building and easily recognizable by the Dos Locos bumper sticker. In my condition walking is out of the question.
* It’s fairly impossible that three greeting cards to the same person from the same person would get lost while all other cards and mail arrived in good order.
* There is a telephone in the kitchen and next to the bed.  Even on my worst days I am grateful for a phone call from anyone interested in my well-being.
* The best part and biggest lie: No messages could have been left because I have neither voice mail nor an answering device on my phone line. It’s a flat rate, basic local calling service - and no bells and whistles.

Oh, and there is always the matter of this blog. It’s been on their blogroll for years, but clearly never bothered to read or check it out.  Truly bad form and such pitiful lies.

The reason for my initial note was ignored completely, instead of answering my questions the ball is tossed back into my court and I am told to call if I want to make contact. Only do it privately, not on FB.  Like that’s going to happen.

I already made initial contact, and it was rebuffed. If I make another one it will be on FaceBook, as well, and I know they don’t like that idea.  Too public.


I will take that as the real message here and move on. No more anger, shock or disappointment. Now only sadness that I miscalculated once again. I’d sure like to be right once in a while.  That’s all. 

And so it goes.
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"I Still Got It!' Caturday


Was there ever any doubt?

More later.
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Thursday, April 17, 2014

Am I Glowing Yet?

Sound the Crumpets! I am officially a Chemotherapy patient.  Don’t clap, throw nickels.  Please! If you need a night light, I am for hire!

Finally got the questions answered by a different cancer center operative yesterday afternoon and started the new med right away.  I was told the voluminous pages of warnings are mostly scare tactics to force people to “respect” the medicine.  Really?  Funny, that.  All it did was scare the ever-loving crap out of me.  I mean, just one look at that bio-hazard emblem on the plastic zip bag containing the bottle of tablets is enough to set off a red alert in anyone’s head.
OK, that’s done and I am on the yellow brick road to who-knows-where.  But, I’m on the road. A new adventure everyday, right?

The sister made it through the first surgery OK, but the second one had to be cancelled.  They ran into another few snags that would have had that surgeon in her upper body for another 6 to 8 hours.  The collective opinion was that she would be at more risk than originally thought.  They may decide to re-examine her case at a later time, but I don’t think she’ll go for it any time soon.

She’ll be on the ventilator for about 48 hours as they re-inflate her lungs and monitor the results of the most important part of the surgical procedure. My niece called thrice to update me. By the third call she was quite subdued having seen her mother in the CICU out cold, pale blue and terrifyingly cold in that room full of bells, whistles, lights and switches.

The niece wasn’t allowed to stay long, but swears that my sister knew her when she held her hand for a few minutes, before being run out of the place. 

I slept better than I thought I would. The stress of waiting for sister news coupled with the stress of my own situation both being somewhat resolved gave me a little peace as I took the evening meds and prepped for bed.

Off to the Center this morning for the weekly labs and hoping my numbers continue to rise to the plus side. Maybe I won’t require transfusing again tomorrow, which would be nice, but we shall see.

As I said, I’ve felt fairly well this past week and hope the Chemo doesn’t fuck up the feeling.

And so it goes.


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Wednesday, April 16, 2014

My Feet are Getting Cold!

And not because there is new snow and ice on the ground from heavy storms overnight.  The scratching awakened me at midnight as the storms raked the area for a few hours.  I eventually went back to a fairly sound sleep.  Sun is out, but it's 30' F outside this morning.

No, my feet are getting cold because the new Chemo caps arrived late afternoon yesterday; too late for anyone at the center to confirm and approve the start of therapy.  So much for doing things by the book. One would think there’d be more than one contact rep. for this kind of situation, yeah, one would think.  Silly of me, I know. So the drug sits in its toxic plastic bag until I get confirmation to begin the therapy. (Click the image above to embiggen.)

Pity, I hoped to begin as soon as the drug was delivered;  looking forward to it, in fact. Not so much anymore.  This gave me oodles of time to read the detailed documentation that arrived in the package. It’s printed on 5 single-sided legal sheets of paper in about a #8 font face.

What I read scared me quite a bit. And unfortunately, I've had all night to think about this stuff. Handling this drug is like dealing with toxic waste. No crushed tabs, no opening tabs for any reason (why would one want to do this?) and if skin contact is made with the product inside the tab, the area should be cleaned and scrubbed properly and the doctor’s office made aware of the “accident” immediately. 

Hey!  This stuff is going into my body and I cannot touch it? Needless to say, I have plenty of questions for the nurse when she finally returns my call.

The side effects are basically the usual suspects; diarrhea, dizziness, weight loss, vomiting, etc.  Been there, done that. Funny how they never mention how common (or rare) such side effects are.  Don’t get me wrong, I am not afraid of dying, quite the contrary. I am afraid of suffering, endless pain, and/or organ failure.

I will hold the Panic Button until I get some real answers to some important questions.  Wish me luck.

More later.

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Tuesday, April 15, 2014

Wait, Wait, and…Wait

The seasons have reversed once again. 80’s with bright sun on Sunday and monday, but dropping like a stone today to the 30’s with rain storms and high winds.  Turn turn turn. Welcome to the beach!

The consult for the PORT-A-CATH* (not a PICC) with the surgeon almost didn’t happen.
*The term portacath is a portmanteau of "portal" and "catheter". Port-a-Cath is a brand name of Smiths Medical; others include Eco Port, Clip-a-Port, SmartPort, Microport, Bardport, PowerPort (power injectable), Passport, Infuse-a-Port, Medi-Port, and Lifesite (for hemodialysis patients). The term totally implantable venous access system (TIVAS) is also used. Additionally, a portacath is the main form of a central venous access device, and is frequently referred to as such in the medical field. 
(As the image shows, the port-a-cath implant is on the left; ; the standard PICC port on the right.) Click the image to embiggen.

After waiting an hour beyond the appointed time, I told the receptionist I was going to have to leave and reschedule if I wasn’t seen ASAP. After a surprised look, she said the doctor was running late. I had already noticed this by having to stand in the tiny waiting room - all 6 chairs were occupied.

I replied that I had other appointments that were just as important and since the doctor was running late all day, someone could have called to inform me, so that other plans could have been made.  She just cocked her head and gave me the strangest look.  Guess this sort of thing has never happened to them before. Hard to believe, but not impossible.

Five minutes later I am with the assistant in the exam room wasting another 10 minutes verbally answering all the questions I just wrote on an 8-sheet questionnaire while in the waiting room. Waited for the doctor to make her appearance and when she did she was full of apologies for keeping me waiting.

The 2-minute exam done, she warns me with the usual disclaimers about possibly punctured lungs, and blah, blah, blah. You know, accidents do happen! The doctor is off again while the assistant finalizes the date and shoves a list of pre-op instructions into my hand. 

The date is tentatively set for next Tuesday, April 22. I say tentatively because there is no set time of day and someone must drive me to and from the hospital. I will be sedated and unable to drive for up to 6 hours - and they’re sure as hell not going to let me sleep it off in a spare bed.

I have to find someone who is free at any time during the entire day to be at my beck and call, or hire a taxi service.  The prep and surgery take very little time.  One hour pre-op sedation, 45 minute surgery, 30 minute post-op recovery - - then OUT!

It’s the no-set-time frame that is the fly in the ointment. Asking someone if they’re available from 8 am to 12 noon is one thing. Asking that they tie up a whole day waiting for a phone call, is something else entirely. Debbie just spent 3 days with her mother following cancer surgery and I’m sure she’s pretty exhausted. Of course, I have to give her first dibs, or she’ll be annoyed that she wasn’t able to help. Yes, I know.  

Something will work out.  Or, not. 

Today is a wait-at-home day. The new laser printer and the replacement black inkjet cartridge should be delivered today.  Getting both of those set up and working will pass the time otherwise spent idling, waiting for the Chemo to arrive.

Yes, the Chemo prescription is also out for delivery sometime today and, as mentioned in an earlier post, must be signed for. And no, there is no set time for delivering overnight medications.  I checked. 

I’ve been enjoying these past few days without nausea or vomiting. I just hope that remains the norm when I start the new drug. I still have little appetite so other than yogurt, soft or hard cooked egg & toast, and cheese & crackers, Ensure is my twice-daily friend. I hope the appetite improves, but who knows what Revlimid does to the innards?  Not I. 

Another new mis-adventure adventure.


Before I forget, a big THANKS to Anne Marie for the note card and well wishes.  Very thoughtful of you. Sure cheered up my day. 

And so it goes.
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Monday, April 14, 2014

How Civilized.



Amsterdam looks better to me every day. Here, they just stuff the body is a trash bag and throw it in the nearest dumpster. 


Ah, happy thoughts of death and dying in America. Sorry, I don’t have any of those. 

Sunday, April 13, 2014

June is Bustin’ Out in April

Wait, wait! That’s not how the song goes.

It’s downright hot today. Jumped up to about 80’ by midday and hasn’t begun to drop yet. Spent a low-key day today.  A little fatigue set in, maybe because of all the strenuous (?) activity yesterday.  

The sister called and talked about everything and nothing for almost an hour. She was especially chatty, gushing about the hospital and her medical team - she’ll be in the massive complex that is Touro Infirmary Hospital.  I think it was more for my benefit than hers;  her way of assuring me that she is in good hands. If she’s in Touro, I know that already. She goes in for prep on Tuesday afternoon, surgery scheduled for Wednesday morning.

Her oldest daughter will be staying with her through the surgery and at least part of the recovery. When she has to return to her home, there will be a visiting nurse staff with the sister 12 hours daily.  By that time, (hopefully) 12 hours should be more than enough to keep her comfortable.

My greatest fear, knowing my ornery sister as I do, is that she’ll push herself to do more, thinking that in some way that will make her heal faster. If it were up to me, I’d strap her down, slide a bedpan under her butt and leave her alone for those 3 hours of each off-shift until she got the message.  They don’t call me Nurse Diesel for nothing!

But, she will do whatever the hell she wants to do, and no one can change that. There will be a lot of yelling and screaming between her and my niece; I can almost hear it now.  Sigh!

Tomorrow afternoon I have an appointment with the surgeon who will schedule the PICC implant surgery. PICC = peripherally inserted central catheter.
(Sassy-Bear had one recently and not to be outdone, I just needed one, too. Although his was temporary, sad to say that mine will be pretty much permanent.)

I’m hoping the doctor can do the surgery before I return for Labs on Thursday and another transfusion day on Friday.  It will make life easier for the nurses - and me! No more poking, no more hit or miss with veins.  Just an always accessible port for any and all seasons and reasons. 

One more step to becoming a true Cyborg. There will be this plastic (or nylon) disc-shaped entry point on the upper left of my chest.  Skin will soon grow over it making it barely visible - and certainly less painful for all concerned. 

Anyway.

I’m frustrated by the fact that the black ink cartridge in the new inkjet printer is already spent.  In operation only three months and it’s empty.  Whether it is truly empty or dried up, there is no way of knowing. This will never do. I ordered a replacement as I also ordered the new laser printer which I will use for most everything from now on. 

From my experience, Inkjets are prone to many problems. First of all they are liquid, wet, and are applied while wet.   They can be runny. The prints are air-dried and can take longer depending on the environment. The freshly printed pages are moist to the touch.

Toner is a dry powder, goes on dry and is heated to seal the image to the paper.  Immediately and permanently sealed. Toner doesn’t dry out, age, or clump.  One cartridge assembly usually lasts me about 1.5 to 2 years - depending on usage.

The toner cartridge for the new printer is even less expensive than the one used in the older one that died. It will cost about $56.00.  The replacement inkjet cartridge will cost about $15.00.  $56.00 = 1.5 years, vs $15.00 = 3 months ($60.00 average per year).  It’s just simple math. Enough said.

I’ll keep the Inkjet printer for the scanner option, at least for now. I may chuck the whole affair when the other inks dry up and replace it with my flatbed scanner - which, had I known better, would have done in the first place and saved all this aggravation. Still, a lesson learned. While technology has moved forward, the business of inkjet printing has remained in the middle ages. Not worth the investment.  There, I said it…

Hey, Epson!  Sue me. 

OK! Here’s my first entry into the Sunday Selfie, or Selfie Sunday (whatever it’s called) meme. It was actually taken yesterday and the only reason for the jacket is the wind.  I know, it’s usually windy as the ocean, but I haven’t always been immune-compromised. So, it is what it is. 

Laugh all you want. I do that every morning in front of the mirror as I attempt to shave. There were always few pictures of myself (I was the photographer, after all) but there are even fewer now since the destruction from my previous life and the flooding by Katrina.


And so it goes.

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Defend the President

That I do. Through all the hateful bile he has maintained his dignity and sense of humor and remained focussed on making lives of all Americans a little better.


And much to the dismay of his many enemies, he endures.

More later.
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Saturday, April 12, 2014

No Stopping Me - On This Beautiful Day

It is a beautiful day. Clear sky with temps in the mid-seventies.
Nothing stopped me today. Well, except me.

Took a spin to North Shores for a brief visit with the Atlantic. Came home and rested.

Removed the old bed linens - and rested.

Replaced with fresh bed linens - and rested.

Scrubbed the tub/shower - and rested.

Hosed it down, rinsed it thoroughly - and rested. 

There is still energy there, but I am not pushing my luck. 

Shower followed by a light something for supper and lights out for me.

Hope life looks this good tomorrow. We shall see…

And so it goes.

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Caturday at the Ballet




She's an artist, dontcha know!

More later.
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Friday, April 11, 2014

New Blood, New Rules, Old Habits

Well, that was interesting. 

First of all, I can tell we’re getting close to spring (and Easter) because traffic is already a mess on the coastal highway.  The outlet malls are crowded and there is a vast array of "The Stoopid" on the roads.

Yes, with the weather Gods/Goddesses smiling favorably on the beach this weekend, all manner of coo-coo, from the outrageous to the gray flannel suit type, has come to town. And to think, with this being Palm Sunday and next week being Easter, we have a whole week to learn how to deal with such ass-holery before getting a breather a few weeks before things get hot and heavy on Memorial Day weekend. 

On the drive to the center this morning I passed 2 accidents and one single car incident - car on its side up on the curb. Mind you, this was a 7:30 am!  On a Friday!  In April! Let that sink in a minute.  

Having been given a heads up from nurses that I was to receive a phone call from the special pharmacy this afternoon, I was ready with pad and pen in hand when the call came in. 

Man, talk about strict rules!!  Dey got’ em.

Turns out THEY will call me every 28 days with their survey and to answer any questions I may have from that given month.  I will then be transferred to a rep. from the drug company who will ask their own questions and I am sure, remind me of the sexual restrictions of the drug. 

I am set to receive delivery of the first 28 day supply on Tuesday. The drug is delivered overnight and must be signed for, so there goes my Tuesday.  Not that I have anything on my hot social calendar, but still, it’s another day shot - waiting.  Like many others anymore…

When the drug arrives, and before the first dose, I have to call a specified Nurse Practitioner who will then tell me when to begin taking the pills.  Oh well, always a new thing, so this is just another twist in my bizarre healthcare treatment.  

Speaking of which, the nurses at the center offered encouragement for the success of the new drug. They explained that the drug can cause birth defects, but it works well in people with my kind of blood disease.  I hope they’re right. From what I can understand, it has been effective in many cases.  

The town is packed with tourists this afternoon, so I won’t be parking in town here. I’ll mosey (love that word, don’t use it often enough) on up to the state park instead where few venture in the off season and I can sit on the breakwater in relative peace for a few minutes.  I’ll try the boards tomorrow morning before the weekenders get out of bed.  Ah, just like summer time!

Hey, you know…it’s a beach resort town, and it is what it is.  I just hope to get to enjoy part of the show.

And so it goes,

*

Spring Break Comes…


And the Ocean awaits…

Quiet before the storm here.  For some nearby states Spring Break begins today and ends next weekend on Easter. For 2 others, it begins on Good Friday and wraps up the following weekend - after Easter.

I hope to feel well enough after the transfusions today that I can spend some time on the boardwalk, or maybe even on the beach at North Shores, before the parking fees go into effect. The weather is forecast to be nothing short of spectacular and I want to be out in it.

Off to receive new life and new blood.

Have a great weekend.

More later.

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