I Really Need A Plan

It has been another 3 days since I’ve heard of any brilliant plan from the Gods on High regarding any new treatment and I am alternately wide awake or very sleepy when any rumor arrives. So far, it’s all turned out to be rumor, cause here I sit.

I’m getting a lot of reading done and in my very confused little mind trying to sort out a legal itinerary for a legal trip to Holland for a soothing end to this nightmare via a short side trip to Euthanasia

Anybody up to a trip to Holland?

I keep trying to write Dutch friend, Peter, for his input, but the words don’t seem to come together on paper so I give up and try again another time. I mean everything from coordinating oxygen, wheelchair, medications, transportation to airport and to the Dutch medical facility, and then reversing the whole process - without me in the mix. 

Ashes scattered all over Amsterdam would make me very happy and content.

If you have any experience along these lines I’d appreciate any input you’d be willing to share.

Meanwhile I await the coming visit of at least one surgeon or specialists for quality care of some kind…ANY kind.

Anyway, Happy New Year, if you don’t hear from me beforehand

Amazed and still confused.

*

ABBA, Answers, & Baba Ganoush

Greeted the day with little pain and no dizziness. Drank 2 large glasses of orange juice while brewing a coffee. Feeling pretty good today.

The song swirling around in my brain when I awoke this morning was “Take A Chance On Me” once a not-so-big hit by ABBA. Fortunately, the song was included on the one CD I have of the group, so as soon as the sun  came up and I was sure not to disturb anyone, I played the thing just to get it out of my head.

Called the Center today with important questions for the doctors. The nurses in Triage helped me out a lot explaining some of the reactions I am experiencing and can expect for a while, as the body works up to its “new normal”. Then I talked with the doctors.  I took a lot of notes. I had to. As I re-read them they sounded more complicated than they actually are. Common sense stuff, really.  

So now I kind of know what to expect. The reason most of this information wasn’t given upon release is that people react differently in similar circumstances and it is easier to focus on an individual after the fact when they experience specific symptoms. At least that’s what they told me. In other words if it didn’t happen to you it’s not relevant to your situation. So there!

The bottom line is:

Recovery will take a long time.

Expect mild to severe pain at any time.

Take medications on schedule daily.

Get plenty of rest.

Be aware of minor physical & mental changes.

Be aware of internal bleeding.

Watch for external bruising, skin discoloration, and rashes.

Pushing the body to heal quicker can cause a relapse.

Sleep whenever possible.

Do not drive a vehicle until you know you can.

Drink plenty of water.

Eat when hungry. Force-feeding is not good for the body.

Eat what gives most pleasure, on Neutropenic diet.

Eat plenty of cooked fruit and vegetables.

Now, that’s a lot to be conscious of on a daily basis.

The truth be told, if it wasn’t for those three taking care of me from day one out of hospital, I wouldn’t be here now. It really is that simple. And to think that Linda already had an over all plan of care before I even got home is mind-blowing. She’s a very insightful woman.

On a funny note, I contacted the Funeral Home to set up an appointment to discuss my “wants and wishes” regarding a funeral. The person answering the phone couldn’t be bothered and told me to complete the survey/questionnaire at their website. I suppose those close to death or their family members don’t need personal, customer service when a few questions answered online can whip out the perfect service for their needs. Maybe I’ll answer the questions at a later date, right now I can’t stop shaking my head and laughing. 

To brighten my day I just received an email from my Visa Card company offering to turn my miles into gift cards.  Ten thousand points equals a $100 gift card. I think I will choose an Amazon card and spend it on myself since I’ve bought a lot of ebooks lately and there are a few other items I would like to order, not the least of which is proper kilt hose, or socks. With the temperatures dropping and the inability to wear long trousers (due to the leg rash), I think I’ll need a little help keeping warm this winter. Though my legs seldom get cold, my body has changed and ain’t what it used to me. 

I’ll keep - and add to - those points in the off chance that I can use the air miles for an upcoming holiday somewhere away from here.  Hey!  One can dream, can one?

Going to ask Jeffrey to take me grocery shopping tomorrow. I’ve suddenly got a craving for Baba Ganoush. I need a healthy snack to munch on while on the computer or reading. Now if I can find enough energy to prepare it, all will be well. I will use store-bought Tahini, no energy to make my own.

ABBA has been playing in an endless loop in the background all day.  Aaarrrrrggggghhhhh !!!

I am amazed.

*

Best Laid Plans & Encouraging Results

Neutrophil. My Friend.

Thanks to that tried and true old saying “the best laid plans of mice and men often go awry” and the ability of the Center Staff to seemingly work major miracles, everything was compacted and accomplished in this single day. When the reality hit that I had no transportation to doctor’s appointments tomorrow afternoon, mountains were moved.

Fortunately for me, a new patient was kind enough to switch days and times so all my Lab Work and other appointments could happen this morning within a few hours of each other rather than spread out through tomorrow.  

Nicole was a gem; just sat with homework spread out and did what needed to be ready for class tomorrow. Between Labs and waiting for results we sat and chatted in the lounge. When the results were announced I was whisked off to the doctor’s office for a check of vitals, review of the results, and a consult pertaining to care over the next 4 weeks. 

Turns out there is no bad news to report. My blood count is still on the rise - hemoglobin, platelets are up, even neutrophil count nudging at the normal range. The only negative is the white cell count which remains low, causing the weakness, quick fatigue and shortness of breath.  Which is something I don’t understand since Neutrophils are about 50% white cells. Still, I’ll take the rest and hope the white cells will eventually come along for the ride.

I am elated that I need not be infused this week. No blood product necessary. Maybe someday I’ll be able to go two or three weeks without infusions so I can take a mini-vacation away from everything here. Hey! It's something to look forward to...

Four drugs were discontinued, replaced by 4 others so a stop at the pharmacy to drop off the new scripts was on the gay agenda. I was tiring out and we were both getting hungry so a hardy breakfast was the next and last stop before heading back to town to deliver me to my second story prison. 

Nicki will pick up the new drugs tomorrow and drop them off on her way to work at Dos Locos in the afternoon.  Still the number of scripts on my list is smaller than it’s ever been.  That alone gives me hope. 

I am shocked and amazed by even this small change for the better. I am not going to get too excited yet. I don’t want to be shot down mid-flight again anytime soon. Slow and steady and the blessing of having the supportive folks around me to allow that to happen.

It’s been a long and exciting day and I am just about to pack it in, take my evening meds, slide under the covers and read until I fall asleep. Tomorrow is another shut in day and I'll not mind a bit.

I am amazed.

*

Vandals, Vitals, and The Boogie Man

Vandals set off the fire alarm on the floor making the scene look like something from a Three Stooges movie.

An elderly patient died a little while ago, sending the already over-wrought nursing staff caring for her into a tailspin. My room could have used a couple of bottles of wine to help deal with the pain. I don’t know the person, those who did loved her to death.  Literally.

Ron (Retired in Delaware) paid a visit having read yesterday’s post he thought it was safe and I’d not be groggy or asleep. He was right. That didn’t happen until later in the afternoon.  My own fault. I tried to do too much in one day.  Pain meds helped take the edge off in the afternoon and evening.

Linda brought Chinese food for lunch as we scanned the papers for year-round apartment rental ads.  Making phone calls between bites quickly became tedious, so we settled on eating first before returning to the search.

Apartment hunting eventually took me to Craigslist where I found 3 possibilities. Having never been to the list, it took a while to navigate the site and learn the shortcuts.  Still not sure I know many of them, it is a strange place, indeed.

Three days to go on antibiotics, the pneumonia should be pretty much gone and I ought to be free to go - if my blood numbers keep up to speed.  Trouble is, no where to go - yet. Back on oxygen to further clear up the crackles in the lungs and am now using a new device that looks like something between a bong and a killing tool from Star Wars. It is supposed to strengthen the lung capacity.

Took another walk this morning and the thing must be working because I wasn’t short of breath or dizzy when I returned to the room. Oxygen level remained at 96%, so I guess I’m doing something right. 

All things considered, it’s a pleasure being in a place where every waking moment isn’t devoted to hyperventilating about the Ebola scare. From what I’ve read, not much I’l grant you, this is being hyped just like the H2N1 virus was a few years ago. No one seems to be as terrified as the media would like us to believe.

One can read 3 different news sites and come away with three different story lines.Nothing seems to be focused or presented without some mild hysteria.  Yeez! 

Reality, people.  Reality.

And so it goes.

*

Rigers, Oxygen, & Demerol

Bother!  It’s happened again.  Just when I thought I was getting a handle on the relationship between the fevers and the acute pain another new wrinkle is added to the mix.

At 1:30 this morning I was virtually flattened by a fever of 103! It came out of nowhere, sent nurses into quick action, left me sprawled, trembling with Rigers as they attempted to warm me up and make me comfortable. I also received another 6-pak of platelets. Which seemed to help, too.

No false alarm this time round (you know how tired I get just writing the same things over and over again?) only a real slam-bang slice of the nasties to ruin my night’s sleep and make the day miserable. I’m eating a little more, though not much. 

Bev-Ann, one of the best nurses at the center called this morning to say good-bye, seems she’s on her way to 3-weeks in Spain and wanted to tell me she missed me and hoped I was doing well.  Now how nice is that??

The rest of today has been more surprising than ever. As the sun tried to make an appearance through heavy cloud and rains, my energy level seemed to perk up and I was suddenly very hungry. 

After a moderate size breakfast - with 2 cups of coffee, mmd you! - I shaved and trimmed by beard (baby-fearsome is still thicker than I ever imagined. I set about doing a medi-wipes hand shower, followed by a good shampooing.  I’ve not been able to shave my head in almost a month, still can’t, but I was able to scrub it clean and feel refreshed.  More than I have in weeks.

Attacked all the paper work and updated mailings from credit cards, credit union, etc. It’s been sorted out and will go into the file cabinet when Linda returns this weekend. 

By lunch time I was hungry again, but only enough room for a soup, crackers, and some sherbet.  More than enough for me; it felt good not to waste food, too.

After lunch I knew I was done for the day and settled in to read a while.The pain was really bad, but so far, no fevers. A very good sign. Put on oxygen, grabbed an icepack for my upper back, slid under the covers and rested.

For some bizarre reason I feel a kind of calmness that some things are about to fall into place and I’ll be out of here soon.

The LocosGuys called with more cryptic questions and statements regarding my time frame for the move. They keep pointing to an apartment in a specific development, but won’t give me information, so I am not going to take in seriously as I continue to hunt for new digs. 

While I like the guys, this is no time for 20 questions, Truth or Consequences, or Jeopardy.  I need a place to live. No games! I have no time for games, and even less time for bullshit.

Now I await a happy painkiller to see e through.  

Here’s hoping for a peace filled, glorious night. The Seawitch Weekend begins tomorrow.

And so it goes.

*

From the Edge of My Bed...

The past several days have been a painful haze. I don’t even remember publishing yesterday’s post. 

I’ve been flirting with fevers of up to 105 (highest is 104.6 so far)  but for some reason last night, my body threatened to drown me as the fever finally lost it’s battle for supremacy - where I was at 103.5 at one instant then 99.1 a few minutes later. 

Taking deep, full, breaths was suddenly very painful and I didn’t know where I was or what was happening to me.  Turns out I am still in the same room, same hospital, a 3-day fever finally broke, and there was increased activity all around me.

Turns out I have a darling case of Pneumonia and there is a lump of something in my right lung - lower lobe.  Haven’t eaten in 3 days - only ensure, sherbet, and ice cream - so I’m pretty weak.  

The battle of the fevers is caused by the tumor fevers and the pneumonia fevers - and I am stuck in the middle.  No fair!

Temperature remains 99.F and I am scheduled for a Barium Milkshake this morning in an effort to find out where that lump has come from.  This means, of course, that my first hours feeling well enough to eat food is denied me until after the test. So, what’s a few more hours?

Linda is in Ireland today. Before leaving yesterday, she stopped by bringing me fresh clean underwear and a few snacks I hope to enjoy later today. She talked about emptying my apartment, since I won’t ever live there again, told me of possible living spaces she has feelers out for and even though I was still in a fever fog, before leaving for the airport I know she sat next to me on the bed, held my hand, looked me straight in the eye and said, “I Love You Wayne!”

We’ve never used such language in the past, but she said it, meant it, even kissed me on the cheek before heading out the door. Touched, stunned, surprised, disbelieving, and so many more feeling welled up inside of me. I curled up and cried like a newborn babe.  I felt empty and full at the same time Hard to describe in this drug induced state. I’ve never heard those words spoken in quite that way in my life.

Anyway, it’s 4 am, on Thursday morning EDT and I am actually sitting on the side of my bed feeling strong enough to write at least a little of what’s been a nightmare here. 

Doors are closing rapidly, but others are opening very slowly, if at all. I hope for more positive change by the weekend.  Time will tell.

I’l try to get to email and check out comments as I feel well enough.  I never thought just the act of checking email would be so consuming and overwhelming.  But it is, Blanche,  It is!

I’ll trying being more consistent in writing, but make no promises. I’m tired already and 4 hours still remain before the test and the possibility of food after that.

And so it goes.

*

Gotham Must Wait. Or, Not.

A  trip to NYC, including an extensive tour of Memorial Sloan Kettering Cancer Center is currently off the gay agenda. At least for now, anyway. As I wrote last week, there was a tentative plan in the works through the Cancer Center here  for me to be evaluated for any suitable trials or upcoming studies at MSK.

Aside from being a logistical nightmare - get to Amtrak in Wilmington, DE for a train to NYC, subways/walk to the hospital on York Avenue at 67th Street; go through hours of paperwork, tests, and mental evaluation. (I'd probably flunk right there.) Then reverse the whole affair to Penn Station, to Wilmington, then the drive back home (about 2.5 hour drive) - especially since I would be going it alone the events of this week have pretty much killed the idea. At least to my mind.

I suddenly caught a cold, or had an allergic reaction to something (take your pick) a few days ago and spiked a fever.  With this, at no extra charge, came chest congestion and a wicked cough.  In a Neutropenic like myself, this sets off flashing lights and blaring sirens. Spent 4 hours at the center as they drew blood cultures, took urine samples, prescribed a mega-antibiotic, and re-prescribed one med that was put on hold a few days prior. 

Two days later the fever broke, just in time for the HH Party Monday afternoon.  No fever has dared to return since.

Blood work yesterday revealed low CBC again.  Not good news. There was only a slim chance I could have made the Manhattan trip alone under those circumstances. I didn’t like the odds.

I received 1 unit of blood today, am scheduled for Neupogen shots the next 3 days. The 4th and final cycle of Chemo begins on Monday for 7 consecutive days. There is no time for NYC in there, anywhere.  Even if there was the luxury of door-to-door transportation, it wouldn’t work out right now.

So with all this not happening, it’s another round of hurry up and wait.

I have no other medical appointments for the rest of the week and I am loving it no end. Lots of YouTube documentaries in my future, thank you very much.

And so it goes.

*

A Sunday Meditation

Sweet Honey in The Rock:  Breaths.  It doesn't get much better than this. Especially with all that's happening all around us today.

I am especially in need of this song today. I hope it will soothe your worried mind, too. If you need to, Google the lyrics, you won't be disappointed.

And so it goes.
*

Just a Thought: Openings

*

Just a Thought: Want

More later.
*

R.I.P. Paul Mazursky

Many good works, and some so awful they're hard to think about, or even remember. 

New York Times:
Paul Mazursky, an innovative director and screenwriter who both satirized and sympathized with America’s panorama of social upheavals in the late 1960s and ’70s in films that included “Bob & Carol & Ted & Alice,” “Blume in Love” and “An Unmarried Woman,” died on Monday in Los Angeles. He was 84.
A family spokeswoman, Nancy Willen, said he died of pulmonary cardiac arrest at Cedars-Sinai Medical Center. Mr. Mazursky lived in Beverly Hills.
As the nation’s counterculture revolution shattered traditional norms of sex, marriage and conformity, Mr. Mazursky made his most popular and commercially successful films: lighthearted sendups of wife-swapping, yoga classes, group therapy, pot-smoking, midlife crises and other self-absorbed, middle-class indulgences that reviewers said he crafted with even-handedness and generosity.
Some critics complained that his satire wasn’t cutting enough. Others called his comedies crisp at a time when behavior was at its fuzziest. Vincent Canby, in a 1976 analysis in The New York Times, acknowledged: “Mazursky is a tough man to handle critically. He is alternately witty and brilliantly sarcastic, then suddenly, soddenly sincere and self-centered, only to explode unexpectedly as a first-rate social satirist.”
In his most vivid illustration of the technique, he explored the pain and dislocation of divorce, and its liberating effects, in “An Unmarried Woman,” released in 1978 and quickly embraced by the women’s movement. His screenplay was nominated for an Academy Award, while the film itself was nominated for a best picture Oscar and Jill Clayburgh for best actress.

More HERE.

And so it goes.

*

Learning the Chemo Cha-Cha

I Don’t Know This Dance

Here I thought I was doing so well - no transfusions for 3 weeks running - but

that ended today. CBC lower than it has been in months (without new blood, I guess that would happen to someone with my cancer) I required 2 units today.

The oncologist also decided that I will begin a new, stronger Chemo next week. Injections on 7 consecutive days followed by 3 weeks off. A different injection site chosen each day because the site of the previous day will be sore, discolored and swollen. The side effects aren’t friendly - a far cry from the last Chemo - but he’s hoping this might turn things around by summer’s end.  

I had multiple warnings from nurses today regarding things to expect and if I happen to experience an allergic reaction, not attempt driving myself to the hospital, but call 911, instead.  Charming.  On the flip side, they all think I’ll handle it quite well. I hope to live up to their expectations.

This new turn of events has certainly put a damper on my spirits. It was more depressing than usual as I sat for 6 hours receiving new blood with all the other sick people around me. 

I don’t know what to expect, so planning for the worst is out of the question.  There are far too  many “what-if’s” to be concerned at this point. I’ll take it as it comes. But it sure is a downer after these past weeks of feeling pretty good. At least I haven’t got too much hair to lose! Oh well, it is what it is.

Just in case it knocks me for a loop, I’m going to download a few new books for the hours and days I’ll be spending in bed. It will keep  me busy and take my mind off of everything unpleasant. 

And so it goes.

*

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.

*

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.

*

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.

*

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.
*

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.

*

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.

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Health, History and a Solved Mystery

I feel like I'm treading on eggshells here. This is day two without pain, vertigo, or shortness of breath. Granted, I ain't pushing the envelope here, either. My butt was sore from lying in bed so much (now you know I am feeling better!) so I tried to make myself useful today. Sorting medical bills wasn't the greatest of challenges, but it was a beginning. 

I felt well enough to actually do something fun for a change.  I baked a loaf of bread from an old recipe given to me many years ago.  It turned out well, even better than I remember it. So now, since I can't do any hand-kneading with the arthritic hands, I'll just keep the bread machine in the cabinet for these little delights.

It's a beer, bacon, and green onion loaf; perfect with an evening meal or as a mid-day lunch, toasted and topped with pulled chicken or pork. I enjoyed a buttered slice with my supper tonight of beef tips, gravy and egg noodles. Delicious.

As mentioned in the past, I'm a Tarot devotee, introduced to the cards in my teens before getting more involved in my late 20's. I have 3 personal decks that I consult regularly - one being the slightly over-sized Crowley - Thoth deck  - and the favorite being the Paladin Aquarian Deck designed and issued in 1970. It's a beautiful deck and I get great joy in examining the images on each card. 

And, as most Tarot geeks, I also point to the great old standard, the Rider - Waite deck that offers much detail, sometimes more than necessary, that always has a sobering, grounding effect, at least on me.

OK, so where am I going with this?  Well, I'll tell you. 

Back when I was in film school at NYU, I met a Frenchman who worked on a few student films with me, loved that I was from New Orleans, and proud that some of my family hailed from his region of France,  Alsace Lorraine. We became friendly, meeting for greasy burgers and pints of dark draft beer at the Dugout on Bleecker Street at least once a week.

Now this was the 1970s and the Tarot was experiencing a resurgence in popularity in the US, especially at university. Jacques was a long-time reader and loved to talk about the old European customs for readings and the different decks that were used in various regions and countries. 

The cards of his deck of choice, battered and frayed at the edges as they were, contained no writing, numbering, or labels.  The cards were elongated and the images were taken from Icons mostly from western European countries, I guessed, fused into the most beautiful deck I had ever seen.  Of course, I couldn't imagine cards without identifying markings, but Jacques was an old hand at Tarot from a very early age.  He even took the larger size of the cards in stride. They were about the width of a regular deck, but about 6 or 7 inches tall.  Didn't bother him.  He used the tools he was given. 

Anyway, when finished his time at NYU and before returning to France, I asked if he would send me a deck like his.  He wasn't sure he could find one, but promised that he would, if he did. Well, he didn't. Seems there was no change in Tarot popularity in Europe as in the US, and over the years, we lost touch.  

However, I never forgot those cards the images, and how he interpreted them.  Though I've searched and searched until the Google almost screamed with pain, I was never able to find the deck. There was no formal name  - after all these years - to apply to a search, so it was a blind, only occasional foray into the Tarot unknown that ultimately turned up this. Yes, Today!

click to embiggen

It has a name.  The Golden Tarot, or the Sforza/Visconti Tarot, from the 15th century and it's almost as I remember it.  Is that strange, or what?  This deck comes as a kit, complete with a reading spread cloth and history book of the deck.

It made me wonder about Jacques: is he still living? - did he have a good life? - did he pursue film work in France? Funny how life seems to throw things at you when you least expect them, but feel the need for them most. Yes, the deck has been ordered and ought to be in my hot little hands in about a week.  I can hardly wait.

I wonder what it will feel like and what I ought to expect, if anything.  Well, I will certainly expect to remember Jacques, The Dugout, and late night readings over burgers and beer steins, that's for sure.

And so it goes.

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Thin Mints & Wiggly Veins

Instead of "capped teeth & caesar salad" - never mind, it's a Lloyd Webber Thing. Woke up with this song in my head. Damn these morning ear worms!!! Anyway, it's the first obvious title that came to mind. Deal with it. And humor me, OK?  

Arrived at the Center yesterday morning at 7:15 am, and the place was already jumping. Lots of people arriving for Chemo treatments, some in better moods than others, especially for such an early hour. 

When one of the nurses from the Infusion Dept. came to escort me back to my section for transfusion, she surprised me with a bear hug and a box of Thin Mint Girl Scout Cookies.  The story goes that she found a few little girls standing at a small table in front of some store, in the freezing cold, and she thought of me.  So she bought a box as a gift. What a thoughtful surprise. I tried to pay her but she wouldn't accept my nasty cash. 

There was a large strip of surgical tape wrapped around the sealed box with my name printed on it in big black magic marker letters. She made sure that no one was going to eat those cookies. Every nurse in the section came up to tell me how lucky I was to find the box still intact. Seems they all love chocolate and Thin Mints, too. 

I offered to open the box and share, but they would have none of that.  Those cookies were special - they were mine. Indeed, I did feel special.

Getting down to the blood business at hand, two nurses began to prep me by attempting to open a port in one of my arms.  I have two arms, BTW. That's when the problems began. I have been told I have "great" veins; easy to see and so convenient to access for transfusing. However, with the continued weight loss, it seems the veins have a tendency to wriggle around, making it difficult to open a port. 

After 6 punctures and 3 blown veins, one was finally found to be stable and the access point was opened. By this time I had 6 holes in my arms, covered in gauze and medical tape. The spots where the 3 veins had blown were swelling, and purple - though not painful. These would have to be watched carefully for any leaking as the blood entered my body.  The pressure caused by the incoming blood flowing rarely results in this effect, (but it happens)  which is not pretty, and fairly uncomfortable. 

This stress coupled to the effect of the Benadryl injection meant there would be no reading while I sat there for 6+ hours. So I whipped out the earbuds and listened to music, instead. This turned out to be a mixed blessing. I was able to nod off at times, but still had to be aware of any change in the taped up wounds.  

One outlet began to leak, so the flow was reduced to limit  the pressure, which seemed to help. All in all, the dressings had to be changed twice throughout the day. A day made half again as long as it should because of the slower rate of blood transferred each hour. I was held captive for nine hours rather than the usual six.  Yep, another full day shot to hell.

Of course, as a human pin cushion side-show freak now, I am not allowed to bathe or shower for 48 hours. To shave, I need to wear long sleeves and medical gloves to protect the hands and arms from getting wet and possibly infected. 

Are we having fun, yet? 

Between the vertigo, the effects of the Benadryl, and the Lasix making me pee my brains out every few minutes, I somehow managed to drive home, hobble up the stairs, and belly-flop onto the bed. 

That's where I woke an hour later, feeling suddenly hungry and the urgent need to pee, yet again. Being in no condition to stand and cook a meal, I opted for sour dough toast washed down with cantaloupe before heading back to bed. 

Woke up at 3 am today feeling weak but rested. Though spring-like weather is on the agenda today, I have no plans to leave the apartment.

I've made more lists as I enjoyed breakfast and coffee.  Two coffees, actually. My mind is full of ideas, but I don't have the requisite energy, or even enthusiasm to follow through on any of them.

Weekly blood work yields little positive change.  The CBC remains  low, though the Neutrophil count is back up in normal ranges, probably due to the steroid I've been on for 3 weeks now. But that seems the only step forward - the relief from having to wear the damned medical mask in public all the time. 

I have to let people know that this is what is happening, that it isn't just because I'm lazy or lethargic.  Heaven knows, I've had enough peaceful, down time in the past few weeks and it's not for my emotional well-being. 

Finally talked with the sister.  She's prepping for open heart surgery. She's scheduled in two weeks and was given a tour of the ICU where she will spend her recovery time. I could tell she was apprehensive, but she asked the medical team all the important questions and feels resigned to what's to come. The call cheered us both up and after a half hour we were in our usual laughing mode and feeling better for the conversation and support. Of course, she wants to help me as I want to be there for her.  Ain't gonna happen. 

Of course, I didn't mention that when the vertigo is really bad, I'm light-headed from the inability to gather full lungs of air, my eyes won't focus to read, and I cannot concentrate on a youtube video, I feel as if I'm just hanging around waiting to die. 

On that cheery note I will just say, it is what it is.

And so it goes.

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