Tuesday, April 29, 2014

Can You Hear Me Now?

Why will spring not show its bright, cheerful face and hang around a while is what I want to know? The weather fluctuates from sunny and warm to cloudy/rainy and cold.  Not mild, cold. And the wind…the ever-present wind, no matter what the weather, can drive one to distraction.

Especially one like me who is easily distracted, and not just by bright and shiny objects, either. 

It was a blustery 60’ yesterday as I made my way around town running long overdue errands.  I tire out quickly, I notice (not a good sign) and had to return home before all were accomplished. Made a new list for today, which I thought was to be a similar day weather wise, and it’s anything but.

Today's temperature has dropped by 25’ and the rain has been beating on the skylights almost all night. Checked the forecast (for what that’s worth) to learn that it’s likely to remain rainy and windy (well, of course) throughout the day.

I will choose the most important of the remaining errands to get out of the way, then return home for the duration. The oncologist called in another new prescription to the pharmacy yesterday.  A topical, local anesthetic cream for the port-a-cath to be applied 1 hour before any procedure to ease any additional pain I might have while the wound continues to heal. Very thoughtful, indeed.

Healing is very slow, as I mentioned earlier, but it is constant. No more redness and the purple bruising from the surgery is all but gone. Only 2 of the original sani-strips remain about the wound and they ought to fall off with the next shower, I hope. My next Lab work is scheduled for Thursday morning, with a doctor consult on Friday also on the agenda. That means 2 more days of rest and healing, which ought to be enough time in anyone’s book.  But, see, I ain't just anyone. So, there!

To help clear my over-active (over-reactive?) mind I downloaded a few meditation tapes that run between 4 and 10 hours. I played one last night and it seemed to alleviate the endless memory loops going on in my skull, at least enough that I was able to get a fairly restful sleep.   

In my dreams however, I am still deaf!  Go fig.

And so it goes.

Using Windows XP & Internet Explorer? Stop!!!

28, April, 2014.  The federal government today urged Americans to suspend usage of Internet Explorer. 
The U.S. and UK governments on Monday advised computer users to consider using alternatives to Microsoft Corp's Internet Explorer browser until the company fixes a security flaw that hackers used to launch attacks. The Internet Explorer bug, disclosed over the weekend, is the first high-profile computer threat to emerge since Microsoft stopped providing security updates for Windows XP earlier this month. That means PCs running the 13-year-old operating system will remain unprotected, even after Microsoft releases updates to defend against it.The Department of Homeland Security's U.S. Computer Emergency Readiness Team said in an advisory released on Monday that the vulnerability in versions 6 to 11 of Internet Explorer could lead to "the complete compromise" of an affected system.
Try Firefox or Chrome instead.  Both are free and both are faster than IE. Always have been. The bigger plus is that you will be safer than you would be otherwise.

More later.

Monday, April 28, 2014

Who Knows Where Time Goes

I’m not quite sure if I made it through the weekend on my own or if I’ve been extruded through a very narrow hose. My mind has raced every idle waking moment causing great distress showing memories from the past; images from childhood. Sleeping wasn't much more comforting.

My dreams have been most bizarre.  Usually vivid, they are now unfocussed, out of time, and though people are desperately trying to tell me something, I cannot hear them or make out what they’re trying to say.  Frustrating to the point that I wake to chills and distressed groans. Like I’m missing something important. This has been going on for a while now, so it's not the painkillers talking. If you get my drift.

I spiked a fever at one point, a fever high enough to cause my lips to turn brown and chap up like they were sunburned. They peeled most of saturday and by last night all was back to normal. Very bizarre.

At this point, what does it matter.  It’s Monday and I still have breath, am mobile to some degree, and though I slept most of the weekend away,  taking  care of the most important items on my gay agenda: caring for the wound (which is healing more slowly than I’d like) and taking the meds on time. This place is a veritable time tunnel with 3 timers going at all hours. May sound ridiculous, but I forget easily anymore and the reminders help a lot. Other than that, it was reading or sleeping.  Not caring about anything or anyone else in the world. 

That said, the sister is due to be sprung from the hospital sometime this week. Don’t remember much of the conversation with my niece, but I gather they’re waiting for certain medical obstacles to fall out of the way before they will release her to terrorize the rest of the city. 

I only spoke with the niece, since my quasi-coherent state may have upset the sister. Yes.  I admit it.  Painkillers!  Pure unadulterated painkillers - and I needed them badly. 

No real food, though that would have been nice. Having ingested enough soup and green tea to float Fire Island, I tried my hand at cooking a real meal yesterday afternoon. I had some fresh Choriso which I sliced into small chunks and smothered with baby fingerling potatoes and sweet onions with a little olive oil, Rosemary, and basil. 

Smelled great while cooking but by the time it was done, so was I. There was just no energy left and certainly no appetite for a real meal. I let it cool and put it in the refrigerator for the night.  Probably taste better after sitting in the juices, anyway.  I’ll try eating it again today and see what happens.

Instead, I had a yogurt, slice of melon, and Ensure before slipping back under the covers until the timer went off at 4 am for the first med of the day. 

Today is another day.  Why, thank you Scarlet! 

I will do my best to be up, present, and about as much as possible this Monday. Lack of proper exercise, even just a short walk, isn’t good for the heart - not to mention the rest of the body and mind. 

And so it goes.


Saturday, April 26, 2014

TMI – Snack Time

1. Do you prefer salty or sweet?
Salty is better than too sweet. Dark chocolate  is the best.

2. What was your favorite snack as a kid?
Fresh popped Pop Corn (no microwaves back then) and sour pickles.

3. What is your favorite snack now?
cheese and crackers & sour pickles

4. Healthy snacks are….?
The best and easiest to enjoy.

5. Milk and what kind of cookies? Do you dunk?
I don’t do cookies and milk. Never have. Ruins the individual flavors of each.

6. How do you eat Oreos?
I don’t eat Oreos. Only enjoy them when whipped into ice cream recipe.

7. What is your favorite movie snack?
Fresh popped Pop Corn

8. Cake or pie?
Both, but in small amounts. Dark Chocolate cake and fruit pies are the best. With a tea or coffee, the best.

9. Ready Whip or Cool Whip?
Cool whip smells like a petrol product, and ready whip is all air.  I prefer the work to make a good, proper whipped cream.

10. Potato Chips or Pretzels or Cheetos?
Oven baked chips and Sourdough Pretzels.

11. Favorite kind of ice-cream – flavor and brand?
Chocolate and any combination of chocolate mixed with nuts, fruit, etc., as in Moose Tracks or Rocky Road.  Double Chocolate with Walnuts and Brownies is always a  luxury.

12. Most unusual food you eat as a snack?
Fried Grits.

And so it goes.

A Caturday Plot

A well laid plot, indeed.

More later.

Friday, April 25, 2014

The (not-so) Big Sleep

Another episode of “As The Stomach Turns at General Hospital in Happy Valley” is coming to an end.  I hope there was enough pop corn to go round. 

Lab results were dismal yesterday morning, so I had to return 3 hours later for a 2-unit infusion session. There is always a delay supplying my specific blood product because of some bizarre antibodies that are necessary, for some reason. That’s why I usually have blood drawn on Thursday, then return on Friday if transfusing is necessary. 

Well, my CBC numbers were in the toy-toy yesterday and I could’t wait another 24 hours.  To make matters worse, the blood pressure was too low and the temperature was too high at various stages in the infusion process.  Nothing they tried seemed to have any effect on either condition. Since I didn’t feel anything out of the ordinary (Ha! Ha! I laugh in your general direction.) they continued with the procedures - monitoring me carefully. 

When all was said and done, I spent 10 hours at the Center. I was taught how to care for the port to avoid infection, and learned a few tricks to use for the new POWER PAC which, BTW, was accessed for the first time as well. 

It was painful since the surgery was less than 48 hours before and the area was still raw and purple, but once the blood started flowing, I was able to relax.  No more pin cushion…Yay!

A prescription for a local anesthetic (for the port area) was called in, but when I left for home at 6 pm last night I was in no condition to deal with pharmacy staff. Aside from not speaking English well, they lack a certain je ne sais quoi, if you get my drift.  I wanted home and bed, and couldn’t get here fast enough. No appetite, so no dinner. I was too shaky and exhausted to even think of forcing myself to do one more thing.  Went to bed and slept through til 4 am today. 

Made a coffee, enjoyed a hunk of melon and set about changing the surgical dressing.  As I said, hard to do in a mirror, but it’s done, port is clean, if a little raw-looking on the edges. I am leaving it uncovered, watching closely for leakage, so it will heal faster (The Triage nurse’s suggestion). 

The prescription can wait another day or two. So, I have nowhere to go today. Downloaded a couple of new books, and since we’re due for heavy rains all day I will drift in and out of consciousness as I feel necessary.  Even my card of the day offers some good news and hope.  May it be so.

And so it goes.

NOTE: Thanks for all the comments and well wishes. They do my old heart good and give me hope to keep hanging on. I feel blessed by your caring thoughts.

I will attempt to answer a few comments in the next post or two. It will be so much easier than hunting down each individual comment in the comments section of those posts.  I'll be a accurate as possible.

Thursday, April 24, 2014

Power P.A.C. Surgery…And Beyond!

Jeffrey was right on time Tuesday morning, as usual,  (like me, he hates to be late for anything) and we were at the hospital in minutes - earlier than expected, actually.  But since the directions to the correct entrance were incomplete, I had to make a phone call to sort out that minor mess. 

Same Day Surgery waiting area was already a bee hive of activity as I arrived to check in. Although I was the first surgery of the day for my surgeon, there were patients being escorted back to pre-op before I arrived. Clearly other surgeons began their day even earlier.

And so many support staff.  There were 3 nurses, 3 technicians, 2 anesthesiologists, and the doctor’s assistant - whom I met at the office the week prior.  That gaggle was only for my surgery.  Every cubicle had as many or more hovering around as patients arrived.

A slight hiccup occurred when I told them I was alone and there was no one to receive instructions about my home care and caring for the wound. There is only me.  “But what about Jeffrey?”, they asked.  He’s my transportation only. 

It was becoming a heated debate about what to do about this “problem” and how to proceed. I was getting angry. I was being primed for the anesthesia and had quite enough at some point.  So I sat up and said, “Look, I Am. Alone.  Three simple little words.  If this was going to cause another cold war, just cut me loose of all these tubes, I’ll go on my way and we’re forget this ever happened. I can’t believe that little reality is so difficult to wrap your heads around. I am alone!  It is what it is! Is that clear?  Now, what’s it going to be?

Silence. Subject dropped, as more scribbling and many individual initials went into my file - which seemed to get thicker by the minute. 

There was some concern about my CBC being so low but after a lot of low murmurings among the staff, they decided it was in a safe (enough) zone to proceed.  Shortly after that conversation I began to fade as the la-la-juice took over and I was being wheeled into the OR. Huge room for a tiny surgery like mine. 

The surgery went smoothly. Don’t be shocked by the image above. The actual site is about the size of a half-dollar piece.  Back in recovery I was given ginger ale and saltines as they brought me back to life and Jeffrey was called to fetch me. It was barely 9 am as we hit the road for Rehoboth. 

We stopped at the pharmacy to pick up a pain prescription and then I asked if he’d like to break bread with me before taking me home.  I hadn’t eaten since Monday afternoon and he’d had nothing at all in the morning either. He accepted, thank goodness.

After the hearty meal I was overly stuffed (haven’t eaten that much in ages) he took me home and I took all my meds, grabbed a pitcher of ice water and headed to bed.  As the local began to wear off the pain grew quickly. I knocked back a painkiller, slid under the clean sheets and rested on my back until I fell asleep.

The rest of Tuesday and all of Wednesday are a complete blur. I remember nothing.  I set out all pills on napkins with their various times, so I wouldn’t forget.  Set the timers to wake me as a reminder to take them.  Hey!  It was the best way I thought of doing it. I don’t believe the phone rang once and for that I was grateful. I needed the rest and that I certainly did. 

Ran a fever of about 100.1 at one point but don’t ask me when. It’s all a blur.  Got out of bed for the bathroom and pill-taking, and that is all. 

Back among the living today. Feeling stronger and in less pain. Wound appears to be healing well. I have labs to be done this morning, so I’ll have them check and change the bandage if necessary. It is hard to do these things through a mirror, after all.  I know.  I’ve done it and what a laugh that caused. 

There is a text message from Sassy Bear on the phone since Tuesday morning. I’ve not been conscious enough to respond.  Probably unnecessary at this point. I’ve not read any of my fave blogs all week, either. 

No word on the sister.  She’s in a good hospital and has her 2 daughters nearby. I’ve had my own problems with no one nearby.  This experience reminded me that I must get a new Advanced Healthcare Directive in order, since my previous friend is no longer interested. Trouble is, there is NO one else, so what does one do in that case?  Gotta find out, that’s for sure.

One more note.  After having nothing in my stomach since Tuesday’s delicious breakfast, I was starving, so for supper last night I had a bowl of Ramen noodles.  Yes, the stuff we all lived on in college. I always keep a few packs around in the hurricane supplies shelf, so for about 10 minutes I felt like I was back at NYU.  Stuff smells the same and (unfortunately) tastes the same. Still, it was hot, wet and filling.  Most importantly, I wanted it, which made it go down easier.

And so it goes.

Monday, April 21, 2014

Kittens, Ponies & Rainbows

As the old song goes, “Been Down So Long, It Looks Like Up to Me!”
Blood work depressingly disappointing, but no transfusion last week. Can’t figure that out and too tired to attempt second-guessing the oncologist.

Been feeling like I was smacked over the head with a bag of stones. No energy, No appetite.  Just an all round wretched feeling of pain, loneliness, and despair. Sadness is sometimes overwhelming. Card readings have been of a cautious nature; not at all cheerful or up-lifting. Just get through, that’s all.  Just get through

Spent all weekend in bed reading and nursing lower back pain trying to force myself to eat something of substance. I managed hard cooked eggs with toast, a bit of cheese and crackers. A fruit cup and jello at various times.    The tastebuds are dead - that means no sense of smell, either - and no real hunger pangs to speak of.  It’s a caution all round.                  

Had a reaction to the pain killers where I was unable to urinate for almost 6 hours. The cause - I had taken 2 rather than 1. (though the instructions do say 1 or 2 depending on pain level.) This was eventually alleviated by downing 3 Benadryl tablets and waiting it out. The inflammation finally subsided and I was a peeing fool by midnight.  Much relieved, in more ways than you’ll ever know. 

Implant surgery is tentatively set for tomorrow,  Tuesday, April 22 at 6 am. No food or drink after midnight tonight. With my luck I’ll awaken with a ravenous appetite in the morning and be chewing on my shirt sleeve by the time I get into pre-op anesthetic care. Just another story of my life.

Friend and co-worker, Jeffrey will be my transportation to and from the hospital. Very kind and thoughtful of him and I don’t feel so bad knowing that he’s an early riser as I am, and he’s not working until later in the day.

So far, my body seems to be handling the Chemo well.  No major changes or violent reactions that I can point to and that’s a relief all by itself.

Sister news isn’t all that great.  She had a bit of a relapse on Saturday afternoon that almost sent her back on the ventilator.  Knowing the Aging Bayou Goddess as I do, I can say that she probably tried to do more than she was supposed to do - you know,  just to see if she could do it and prove the nurses wrong - only to get smacked down on her butt unable to breathe thanks to the chest pain.   Some people never grow up.  

We talked yesterday for about 15 minutes (not to keep her talking too long) and her manner was very contrite by then. No need to say “we told you so”  she knew it all too well. The incident put a good scare into her, so I think all will go smoothly for a while, but not long enough. That would take an elephant tranquilizer gun, to be sure.

There are refilled prescriptions to pick up today, though I hate to get dressed and leave the comfort of the apartment and the bed.  It must be done however, since I have no idea if I will feel up to running errands for a few days after the surgery. I don’t know what to expect of the surgery or how long the healing process will be.  I used to heal very quickly, but with all the drugs in my system not sure how they will hinder that process.

Whatever.  It is what it is.

And so it goes.


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: ---------- (cell) ---------- (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.

"I Still Got It!' Caturday

Was there ever any doubt?

More later.

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.


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.


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.

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. 


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.


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.

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.


Caturday at the Ballet

She's an artist, dontcha know!

More later.

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.


Thursday, April 10, 2014

A Teaching Moment, or Two…

Today is the second day on the new antidepressant scrip.  The drug is a generic
version of something called Lexapro.  I Googled it. So far, it looks to have the same side effects and most others of its kind, so I’ll just have to watch myself and stop at the first sign of becoming a Stepford Wife.  Or something like that.

Spent another uneasy night followed by a morning of nausea and eventual vomiting. Showered and shaved which made me feel better, and hightailed it to the cancer center for the Lab work and the “teaching survey” related to the upcoming Chemo “Revlimid” which, it turns out I may receive before the weekend.  We shall see.

Results of today’s blood work are not bad; at least the numbers are steady and not rocking and rolling as in the past. In any event, I’m to receive one unit tomorrow morning, JIC another quick dip occurs over the weekend. I am to arrive at 7:45 am, so ought to be finished and unplugged by 11 am. Like I say, We Shall See!!!

The Revlimid must be a pretty toxic medication. Most questions and information related to straight men and women and their sexual desires. Seems Revlimid (lenalidomide) is in some way related to thalidomide, which as we all know caused thousands of birth defects 50 years ago, and which is why the sexual relationships are so important to address with the patient.  If they only knew! 

The survey was intensive and the company has a rigid followup policy. I must check in on their website on the same date every month I am taking the medication, to answer questions and bring them up to date on any possible adverse side effects that may surface down the road.

If I sound thrilled about this new drug, I’m not. As the saying goes, “I’m sick and tired of being sick and tired.”  So what else is there to do?  Nuttin’ honey.

As I mentioned earlier, the CBC test results are steady, some even rose a tad, but from what I’ve read today Revlimid may take away that good news during the initial 2 or 3 weeks.  See why I’m not so thrilled about this whole thing?  

I guess it beats one or two of the alternatives, but only just.  I think I’ve said this before, but “We Shall See.”

And so it goes.


Let’s Put On a Show!

I just returned home from half a day at the Cancer Center (more on that in a later post) overhearing various rather scandalous conversations boldly spoken aloud by people I don’t even know.  Well, I don’t know them personally, except they’re usually getting Chemo or transfused on the same days I am.

It was only when one of the nurses got into the conversation I realized something was amiss, here. Turns out they were discussing some reality show or other and didn’t know the people they were talking about, either.  So, there!

Honest to Pete, people.  Isn’t your own life bizarre, boring, exciting, intriguing, mundane - well, you know, fill in the blank - already?  

How about this…Since they are all really  “pretend” anyway, why not pretend your life is your very own reality show?  No, really!  Think about it. If you have to set the mood, or make it worthwhile, set up one or two cameras (dummy or real) around your space (where ever that may be) so that you can occasionally break through the 4th wall, glance at one, roll your eyes, and/or otherwise show your emotions to any episode of your life. Right here. Right now!

If you set up real cameras you can record the show and play it back a few years from now when you know how it all worked out. Relive the drama as it happened, the stupefyingly dumb-ass, or brilliant decisions that helped you along your path; the best part is that you already know the ending…

No waiting for “seasons” to be released on DVD or Blu-Ray. You might even rent the "show" out to your friends, as well.  See, it’s a money-making and money-saving device, too.

From the YouTube clips that have made their way to me from sources who thought I'd give a shit - I don't, you couldn’t be anymore tacky, vulgar, or vile than many of the things on the tube.

Just my 2 cents, FWIW.  No need to thank me now. 

And so it goes.


Tuesday, April 8, 2014

Random Thoughts & Checking Off Lists

The innards have finally settled down pretty much after the bout with the side effects from the Augmentin. The stomach is still a bit queasy at times and I’m not eating much solid foods, but well, “every day in every way”  as the saying goes…

Organizing the new desk I’ve decided that I need to go back to a laser printer for the crisp, clean copies I am used to. I don’t trust inks to be permanent - they still run when wet - anything I need to print must be either filed here or sent to the hospital for filing.  Laser toner once heated binds to the paper permanently.

I’ll use some of the tax refund for the purchase. $100.00 will cover this small footprint job at right (includes extra toner cartridge) which will fit snuggly on the "Z" shelf next to the desk. Since the Epson is my MAC scanner, a good and fast printer is all I need. Toner cartridges have dropped in price, too.  I wonder if the price drop has to do with the increased popularity of the inkjet printers. Dunno, and don’t care. I’ll take the lower price and better quality. Maybe fools will catch on later.

I’ve discovered that I am up to my gonads in wires and chargers associated with all the ‘wireless’ devices accumulated over the years. Though the chargers belonging to the old cell phones went with those phones to their new home via the State Police program for battered women, I still have more than enough to contend with. There are also old mice and keyboards from the PC days that I keep trying to give away but no one seems to want.

Years ago, Ron - the dear gossip - at Retired in Delaware, insisted that I purchase a web camera so we could video chat via Skype.  So I bought one.
Why?  I don’t know.  We lived about a half mile from one another, so I gathered it was just a fun toy he wanted to play with.  Then the old PC died and the old web camera wasn’t compatible with the new one.  Ron’s Skyping calls had dwindled by then, but I bought a newer web camera just to have it handy.  A wasted investment.

A year later Ron made the jump to the MAC and that was the end of Skype. So, there are 2 Logitech webcams floating around this place, too. Now that I have the MAC iPad, iPhone, and iPod, they are gathering dust and sometimes under foot at the most inconvenient times. Yes, now I have FaceTime, which is more sophisticated than Skype ever was, not that it matters.  

Now that I think of it, I wonder if the newest web camera could be used with the MINI…my monitor isn’t an Apple, therefore has no builtin camera.  I’m wondering if I could plug the camera into a USB port, check for new drivers and see what happens.  Seems a waste to throw the thing away. 

There are 3 stand microphones from the old (?) days of early voice recognition, which again, are of no use any longer. I could go on and on, but it's making me depressed so I'll stop for now.  Anyway, you get the idea.

The old PC is waiting for Eddie to return from Romania to remove my personal files and photos from the HD before chucking it, or repairing it for someone else. Yes, it's been sitting by the front door for over a month (where else can I put it?) and I can't wait for his return next week before Easter.  
When I have the strength and energy the old Laser Printer needs to go to the tech & electronics recycle center, which is not nearby anymore.

Anyway…I’ve gotta get rid of all this stuff!!?!!

I’ve organized all the relevant cords, cables, wires, and chargers with the devices I use today; they sit neatly wrapped and labelled in two covered, plastic containers on a shelf where all such things live. Nice and clean.  Though these items too, seem to multiply for some unknown reason.  Sigh!

Got a call from the Oncologist’s office acknowledging that I discontinued the Augmentin over the weekend and letting me know the doctor will be looking into a replacement.  They also told me that they called a prescription for an antidepressant, which I can pick up either this afternoon or tomorrow.  

I guess that may be in response to my complaints of short-temper while on the Prednisone, which may be carried over to the Danazol - but I haven’t detected increased agitation since I made the change.  Don’t know what the new drug is, so I can’t look it up, but I’ll find out soon enough.

I may have mentioned this before, but you know a year ago I was only on ONE prescription medication - for the high blood pressure.  Now I am washing down 9; some are taken more than once daily. This new antidepressant will bring that total to an even 10.  

Say, do I get some kind of award for that?  New washer and dryer? Trip to Puerto Vallarta, Mexico?  Hoboken, NJ?  Hey, I ain’t fussy.

The sister’s birthday is tomorrow so I caught her this morning by phone before she had the chance to leave the apartment.  She was happy for the call, but remains quite scared about the open heart surgery coming up next week.  Can’t say I blame her, but she’s strong, asked lots of questions, and her medical team has been available for anything she needs going into this last week prior to the operation. They’ve covered every inch of what will be her physical domain during recovery and there’s no more they can do, except be there for moral support.  Me too.

I really need to put some solid food into my system today, but nothing sounds interesting or the least bit appetizing.  I’ve down the last yogurt and I am tired of canned fruits.  Maybe something will jump out at me when I do the shopping tomorrow.  Trouble is, I can feel myself getting weaker every day.  

That said, I don’t think I’ll be driving to the drug store for the new prescription today.  Just not up to it, is all.  

And so it goes.

Song of the Golden Dragon

As I searched for more information of the other Pern books by Anne McCaffrey, this video popped up and seemed appropriate for the present reading situation.  I’m not making this up, you know!!!
I had heard of this Russian guitarist, Estas Tonne, before, but never seen him perform.  Quite a standout, if you ask me. Also, easy on the eyes.

One can almost visualize Ramoth as she rises to mate with the big Bronze.

More later.

Monday, April 7, 2014

R.I.P. - Mickey Rooney

Very sad news, indeed.  Not something I wanted to read or hear about today.  

A legend, genius, and consummate hollywood star dead at 93. I think he was best paired with Judy Garland in all those MGM backyard films and the Busby Berkley Musicals.  At least that’s how I’ll remember him most.
Mickey Rooney, an award-winning actor and Hollywood legend who appeared in more than 300 films and TV programs, died on April 6, Variety reported. Cause of death was not released. He was 93.
Born Joe Yule Jr. in Brooklyn, N.Y., Rooney was only 17 months old when he took the stage in his parents' vaudeville act. After adopting the stage name of Mickey Rooney* at the age of 7, he appeared in his first film, launching a career that would span nearly his entire life.
* He was Mickey McGuire before changing his name to Rooney.
Rooney was still a teenager when he played Andy Hardy in the 1937 film "A Family Affair." The popular character, as played by Rooney, would appear in 14 more films and make him a top star at the box office. During Hollywood's golden years, the five-foot-three cherubic-faced actor worked with many of the silver screen's greatest leading ladies, including Elizabeth Taylor in "National Velvet," Judy Garland in "Thoroughbreds Don't Cry" and "Babes In Arms" and Audrey Hepburn in "Breakfast At Tiffany's."
Rooney was the first teenager to be nominated for an Oscar in a leading role and received a special juvenile Academy Award in 1938 after appearing in "Boys Town" with Spencer Tracy. He would earn four additional Oscar nominations for his work in "Babes In Arms," "The Human Comedy," "The Bold and the Brave" and "The Black Stallion," and receive an Academy Honorary Award "in recognition of his 50 years of versatility" in film. More recently, he appeared in "Night At The Museum" (2006) with Ben Stiller, and "The Muppets" (2011) starring Amy Adams and Jason Segel.
Rooney's work in television was no less lauded. He appeared in dozens of programs from 1954 to 2009, received two Golden Globe Awards and won an Emmy for his tender performance as a mentally challenged man in the 1981 TV movie "Bill."
According to USA Today, Laurence Olivier called Rooney "the greatest actor of them all."
There were many critics who thought that bringing Rooney and Ann Miller to Broadway in the musical "Sugar Babies" 25 years ago would be a disaster. Boy, how wrong could they be.  The musical was everything the late-70s weary New Yorker wanted (needed) to see.  Covered all the bases from vaudeville, slapstick, to dance and Burlesque.  It was a huge hit. Brings back fond memories, too.

You done good, Mick.  Thanks for everything.

And so it goes.


Side Effects, Stupidity, and Sarcasm

Suffered severe side effects with the Augmentin on the third dose. Knew immediately it was the culprit. Informed the doctor’s office who called Walmart Pharmacy. Couldn’t figure out their reasoning, until they told me that Rite-Aid wouldn’t have the drug  until Monday or Tuesday.  Wow! That’s some reliable pharmacy, don’t you think?

Crawled out of bed, dressed, and made the drive to that dreaded retailer keeping the mask on - the place is always crawling with kids and other filthy things - and got in line for pickup. As I got to the window, the obese cherub (body of a mastodon - face of an angel) behind the counter glanced at the hospital bracelet, then to the mask and asked - “Are you sick, or somethin'?”

There was a sudden hush on the line. I was still queasy and weak, having puked my guts up all night and I just stared at her for a minute hoping to get some hint that she was making a funny of sorts.  She wasn’t. When her gum popped in my face I found my anger bubbling, and said quietly and darkly as possibly, “no, it’s my kinky habit to wear an isolation mask, stagger into pharmacies and taunt stupid people like you.” 

She wasn’t too happy with that and unfortunately replied,  “well, I was only asking.” At that, the older gentleman behind me suggested quite loudly that she would be of better use in the toy department. An associate (who had heard the whole thing) came up and swiftly took over her station, sending her far, far away. 

The gentleman behind me said something about how much he hated having to use this pharmacy. The new associate sniffed, “well, why DO you, then.” Without missing a beat, the gentleman spat out, “because I think that woman’s twin works in my doctor’s office and called the prescription in here by mistake.”  That got a chuckle from others in line, making me wonder just how many were there for the same or similar reasons and not because they wanted to be there. 

Finally, with new drug in my hot little hands, I got back to the car and drove home as fast as possible. A cold sweat hit me as I got in, so I fell into the bed and covered up.  Woke up a half hour later feeling that vile nausea again. 

Waited to take the new med at the same time as others (I’ve already got three kitchen timers going!), brushed teeth and went back to bed. No appetite, so no food. I managed to get an Ensure to stay down; ; that was all I could handle.

Woke up when the alarm went off to take the Danazol at noon.  Made it to the kitchen, downed the med with a 10 oz. glass of water and crawled back into bed. Drifted in and out of uneasy sleep. 

Woke at the sound of the alarm again at 8 pm, took the Danazol and had another Ensure.  Back to bed again sleeping fitfully until this morning at 3 am. 

Started this day with a small bowl of cereal followed by Danazol (and the other dailies) at 4 am. Took note that there were no new side effects from the replacement drug - thanks to the green Goddess.

Currently doing everything in my power to stay out of bed.  A hot shower and shave top my gay agenda today. I feel dirty - probably because I exposed myself to Walmart - and I think a change of bed linens are in order, too.  For that, I need to store up some real energy.  That chore alone could take a half hour to an hour to accomplish and leave me spent.

Ain’t life grand, huh?

Day's Tarot card insists that I am up to meeting anything that comes my way today.  May it be so.

And so it goes.

Saturday, April 5, 2014

The Brink? Or Scenic Overlook?

It was foggy with a light drizzle. The drive to the Cancer Center was a challenge, but I made it; grateful the tea with ginger stayed down. It was a battle of will all the way, though. Physically, I was sliding downhill so fast that when I found a place to park, I had no energy for the walk to the doors.

How long before I cannot make the drive myself?

Spotted by one of the Lab nurses (I must have looked a frightful mess) she tapped on the window and offered to get a wheelchair, or help me inside herself. Not wanting to make a scene (or risk being swept off to hospital) I asked for her assistance. 

Once inside there was no waiting. I was wheeled (like it or not) back to Infusion and with 3 nurses hovering, prepped for the transfusion as vitals were taken. Most of what happened is a blur now but somewhere along the line a mild panic ensued when they discovered my fever.  I thought it had subsided, but I was wrong - it was now at 100.2 and usually a red light, for some reason. 

Blood pressure was very low (even before the Benadryl injection), the room was spinning, my stomach bouncing like a beach ball, my head was pounding and I couldn’t breathe. 

Other than that, everything was fine.  

Arranged comfortably in an infusion chair, covered with warm blankets and legs elevated,  I was given 2 Tylenol and a Compazine (sp?) and ordered to remain still and quiet as more blood was drawn to check for possible new infections. 

I’d lost an additional half-pound of body weight since the day before - on top of 2 pounds lost in the last week. What can I say? 

I nodded off, or passed out. I was disoriented when I came to, realized there was supposed to be a doctor appt before the transfusions and asked what happened. Seems the oncologist thought it best to start the blood products to settle me down first. He came in later, sat in an adjacent chair and went over treatment in the immediate future.  Anyway, this happened later, much later.

Took a while to find a good vein, but finally an IV drip was begun. When the nurse saw the multiple poke marks where porting was unsuccessful, she asked why I didn’t want a PICC port? Because I didn’t know if I was a candidate, or if I qualified, and no one ever suggested it, that’s why. She made a quick note for the doctor in my computer chart, patted my arm and began to pump the Benadryl as the new blood began to flow slowly. 

Vitals were checked again after 15 minutes - fever was down to 99.9, but blood pressure remained too low for their taste.  It was decided that another unit of blood was needed and I wouldn’t be going anywhere for the duration. Like I had somewhere to go?

Doctor arrived waving lab results and offering new suggestions for the next course of action.  Yes, it all happened like that and that fast. First, he studied the latest blood results and my answers to the usual “how you doing” questions. Wrote a prescription for an antibiotic to address the boils and acne, another one for compazine for the nausea, one more for the increased back pain (from lying in bed too long) and then got down to the next phase of my treatment.

He started the ball rolling for a new oral chemo drug called Revlimid.  Which turns out to be not that new, after all.  Revlimid is primarily used to treat anemia caused by Myelofibrosis and other myelodysplastic blood diseases. I say started the ball rolling because it seems this stuff requires a long drawn out procedure to get started. 

I am running out of patience with this long-drawn-out waiting shit and told him so.

Initially, the request is made for the drug from a special, authorized pharmacy (drug not available from your regular corner drug store) which can take up to 2 weeks for approval. The patient is contacted for who-the-fuck-knows what reasons, then the drug is delivered directly to the patient’s home. No, really.  I’m not making this up.

When the patient receives the drug a call must be made to the Cancer Center prior to the first dose.  The patient must report receipt of the drug to a specific person in the oncologist’s office. Don’t ask, there is no reason for, nor explanation given for this extra step.  

Keep in mind, this all hinges on the patient being accepted for the drug and by that I assume the patient’s ability to PAY. The insurance, if any, and the level of coverage the patient enjoys are, I am sure, major factors. 

As usual, the side effects read like a bad horror movie, and as usual, are downplayed as being “rare and isolated.”  Yeah, sure.. Uh-huh.

It was mid-afternoon by the time the second unit began flowing that the fever was down, the nausea was almost gone and while the BP remained low, it wasn’t in the danger zone. Oh, and I was one hungry puppy.  All good signs. 

Carefully, I picked at half of a chicken salad sandwich followed by a fruit cup and was pleased when all settled well. Must admit, that tiny bit of food filled me up quite well. Curious, that. 

The doctor’s nurse appeared with news that a PICC port had been approved, and gave instructions for the initial appointment with the surgeon assigned to the procedure.  This will be a permanent addition to my chest and eliminate the vein search problem once and for all.  Many patients sport them and seem to experience no discomfort.  I’m all for that.  No more blown veins!  Yay!

So in about 2 weeks time I will be implanted and there will be yet another new twist in my healthcare and my body. 

The sun was setting as I was released from all tubing and I was eyed carefully by the nurses as I made my way (on foot) out to the car. The prescriptions were waiting for pickup at the pharmacy, so I pushed myself to make that one stop before heading home. Though I staggered like a drunkard, I was successful and home within a half hour.

Changed clothes, made a tea, and began reading through the pile of new documents received (and signed for) throughout the day. Nice to be more coherent than when I left home this morning. What a difference new blood and a new medication can make in such a short time.

Back from the brink, again? How many more of these trips can one person endure? I wonder. The decline seems to occur more rapidly each time, but for some reason they don’t scare me as they used to.

Thanks to the pleasure of re-reading the “Pern” trilogy by Anne McCaffrey, I’ve been able to put most of the pain out of my mind this past week.  Even after 30+ years, the stories, human characters, dragons, events, and world of her books are still alive and well.  It’s been a great joy to rediscover that world and immerse myself in her characters and their lives.

I dare say at least one of them would make a great Pixar film.

Anyway, that’s enough. The long and short of it. I’m not well and so it’s off to bed - just me, my trusty painkillers, and my book.

And so it goes.

Moria Caturday

"Fly, You Fools!

More later.

Friday, April 4, 2014

The Ugly Has Returned.

Not doing well - again - and have spent  the last 2 days in bed either asleep, reading, or fighting off nausea. The body has rebelled against one of the new meds by presenting plagues of acne, and nasty, painful boils. No appetite to speak of; no food sounds enticing or even interesting. No energy for its preparation, either. I eat what I can, when I can, and pray it stays down. 

It amazes me how quickly things can change - I mean, in a matter of a few hours - and life is miserable all over again. To top it off,  I knew there was trouble when I spiked a fever of 100.1 this morning. Slammed right into that big wall of WTF!  Really.

This turn of events is a far cry from only a few days ago. I felt like taking on the world. Now I can barely put on my own socks and shoes without resting between each process. It’s like there’s not enough oxygen in the room.

There's a doctor's appointment this morning before transfusion where I will learn the next course of action he has planned. I think it may be a chemo.  We’ll see.

Reading has taken my mind off what I’m dealing with, for the most part. Since I spend most time in bed, I’ve not read, or kept up with my favorite bloggers.  I hope that will change after today’s transfusion. 

Though I am scheduled for one unit, something tells me that 2 are in my future once they do a new blood workup. We’ll see.  I also want the nausea issue to be addressed, because that’s really the worst lately. Tea with ginger and lemon help, but not for long and only if I lie down immediately.

I find dry heaves painful and exceedingly unattractive. 

We’ll be back after these messages…

And o it goes.


First Look: New Tarot Deck

The Visconti - Sforza or The Golden Tarot

A Sample: The Pope = Il Papa  (Hierophant)

The Enclosed Guide Description:
In real life, the Pope possesses the right to crown the Emperor, and his position in the Trump story appropriately places him above the other rulers.
The Pope’s right hand is raised in a sign of benediction, and in his left hand, he holds the papal cross. He wears the three-tiered crown that symbolizes papal authority and represents the unity of mind, body, and spirit. His white beard is an archetype for wisdom, while his white tunic represents purity of the soul.
Together, the robe, crown, and cross stand for ceremony and ritual, imparting historical significance and gravitas dot his bearing. In spite of the Pope’s lofty title, all power is temporal, symbolized by the Pope’s position within the Trumps.

A Sample:  Death = La Morte

Guide Description:
This eerily animated skeleton is the starring figure in an allegorical work of art called the Dance of Death, created in response to a plague that decimated the population in the fourteenth century.
Death holds a bow in its left hand and an arrow in its right. Its piercing eyes stare menacingly out of deep, shadowed eye sockets.
We have seen that Strength, having triumphed over unrestrained ambition, has been trumped by the pain and suffering of the Hanged Man, and now, by Death.
It is no coincidence that Death's rank in the Tarot deck is the unlucky thirteen. But it's obvious from Death's position in this allegory that all is not lost: there are many more trump cards left in the deck.

This deck is a marvelous treasure and worth the wait of so many years. There is much pleasure to be had and much to learn about this new (old) deck. I look forward to spending lots of time in its company.  And, oh my, the cards are very large. Yes, even for my notoriously large hands.

More later.
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