Thursday, October 23, 2014

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.


Tuesday, October 21, 2014

Counting the Beats and Pain.

Three weeks and counting. The past few days have been confusing, astounding, and eventful.

Had a few visitors - folks brave enough to face what I look like without screaming into the wind and jumping into the ocean. A few of my doctors have dropped by just to check in. A couple of nurses and techs from the Center have also come by to check to make sure I’m still breathing.

This past weekend was Jazz Fest and, as usual, one of my fave bands were playing at the restaurant. Well, you can imagine my surprise when I received a phone call on the hospital phone from the leader of that band. He proceeded to inform the audience that I was on the phone (the collective reply was, “Hi Wayne, Get Well.” 

Tim then told me he was going to play 2 of my favorites back to back and wanted me to listen to the new arrangements he’d just worked out. I was both thrilled and embarrassed, but he put the phone down before I could voice a complaint or say another word.

Keep in mind that I didn’t have a high fever, but the pain level was through the roof. I have just been zapped with a painkiller and was halfway to happy town when the music began to flow. Autumn in New York drew me in right away allowing me to wallow in my own past images of NY in the Fall.  Great memories. There was great applause when it ended. I think he’t got another winner there.

He picked up the phone, asked my opinion, then before I could give a revise of my own, he launched into the second one.  I Happen to Like New York. I was totally blown away. Yes, of course, I was in tears when that one ended.  But what a treat for a shut-in on a cold autumn weekend.  I loved it.

Linda has called every day from Ireland to check in and make sure things are moving right along. I suppose they are, but achingly slowly at this point.

Two guys from the restaurant showed up last evening for a brief chat, while Nicole came by with bags of junk mail and other nonsense from the apartment.  She took the car out for a drive since it’s been over a month since I’ve done so.

No fever last night either, but great pain in legs and lower spine. I was given  an IV earlier but that’s worn off, so I am about to be put down with another IV push.

I wish I had more energy to sit up long enough to read through, and respond to your many comments.   Maybe tomorrow.

One day at a time, just one at a time.

And so it goes. 

Saturday, October 18, 2014

The Old and News

Sitting up and at peace for the first time in a few days. From my window I can see the treetops from
the park nearby. It’s been interesting to watch the leaves change color and I am sure you’re thrilled with this information.

The news is a combination of old and new.  Extremely high fevers remain the order of the day; so destructive that when they’re over, I feel like I’ve been kicked down a flight of stairs and the rest of the day is pretty much a waste.

No visitors, but a call from Linda in Ireland every day has been quite a life-line. No news on the living space front either. Just more people looking out for me. Something has got to break on this one soon.

I met with my new Oncologist and feel very good about her. A new outlook and drug changes will begin happening on Monday. Aside from her, Dr. Scott (my future ex-husband) has jumped back into my case and all focus now seems centered on creating a better quality of life, for however long that may last. He has also chosen to continue with the pain medication (Fentanyl Patch) even upping the dosage slightly.

The pneumonia isn’t as annoying today, and so far, no fever lurking nearby. I’ve been hooked up to oxygen since last night, so I was dry and hoarse this morning, but water took care of that problem in no time. Scheduled for another 6-pak of platelets today, so I guess I'll be doing a lot more reading.

BTW, Some folks have said that their comments are not getting through and the only thing I can tell them is for some reason, comments that used to be directed to a special email account are now being posted by Blogger. I just found 15 comments and have posted to the blog. As with all things Blogger-related, there is no method or reason for this change, but I know now that there is one more place to hunt for comments now.

If you comments aren’t being posted it has nothing to do with my moderation. I haven’t had to delete a comment in a very long time. 

Not sure if this will make much sense, but too lazy to go over it all again. It is what it is.

Here’s to a beautiful weekend, and a bright beginning on Monday. I do need something positive in my heart today.

And so it goes.


Thursday, October 16, 2014

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.


Wednesday, October 15, 2014

October 11, 2014

October, 12, 2014

Platelets were low so they ordered a 6-pak for this morning. All went well at first. Now the Fever has returned at 101.4 and I felt it coming. Truly bizarre. Nurses raced for the Tylenol and Demerol push. 

Within 10 minutes I was resting, though very hot to the touch. Burning eyes and a splitting headache. Very depressing since I’ve been doing so well of late. 

No internal bleeding from the side effect scare yesterday, so that’s a good thing. 

I just noticed that there are 2 bath tissue dispensers in my bathroom.  One feeds over the top, while the other feeds from underneath.  I guess they try to keep everyone satisfied, whatever your preference. At least that’s my theory.

Before the fever struck today I was able to clean up a bit and trim around my beard. Unfortunately, I have no trimmer on hand, so I’m beginning to look like Fearsome Beard, though I don’t think it looks as good on me as it does on him.  It makes me chuckle whenever I pass the mirror.

Of course I usually chuckle when I see myself in the mirror these days, anyway. I look and feel like a different person. I don’t know how to explain it, exactly, but it’s a kind of release, and relief to see how I look physically, these days. 

Tired and drained at times, but none the worse for wear at others. If you get my drift.  

Don't know when I will rite again.  Life is not good at all right now.

Saturday, October 11, 2014

Good (and Bad) News:

Only minor pain overnight and mostly in the leg muscles and upper back.  Felt like I was beaten with a heavy log in both places. Pain meds helped both times. 

Developed an allergic reaction to an ant-acid script that caused upset stomach that could possibly set off internal bleeding…waiting to see. In my condition, any bleeding is dangerous.

Lab results show another drop in platelets, so I will be receiving another unit today.  Not much interests in food today, either. A few biscuits with butter and honey, coffee and an Ensure were all I could handle so far.

Little bit of fever, just enough to create a scare, set off alarm bells. Took the meds and so far, so good. Hasn’t gone any higher in an hour. Got everything crossed.

Took a nap this afternoon that included a dream about a new living space. It was near the water on the bay. Of course, the dream included a miraculous sun set before the sweet voice of the nurse assistant woke me gently.

In reality there is no news of the new living quarters front at all today. Something has got to happen soon I can’t stay here much longer and they can’t release me to the apartment on the second floor.  Pitcher meet stone - Stone meet pitcher.

No visitors on this dark, rainy Autumn day, was hoping there might be to help pass the time. A couple of phone calls came in. Being on the pain meds it’s just as well I haven’t anyone to entertain.  Of course, I would love a festive cocktail at a Happy Hour somewhere, but I’ll just let that continue to be a dream, something to look forward to somewhere down this crazy road.

I am finally sporting the DNR bracelet and feel better for it. Confusion or mix ups can now be avoided.  

DNR = Do Not Resuscitate

Now that the Advanced Directives are in place, I needed that to be completely covered in any event.;

And so it goes.


Friday, October 10, 2014

Feeling the Power

It’s friday and I’ve been in hospital for 10 days. The first 6 reside in a mist of pain, anger and high
fevers. A mighty powerful cocktail. I am amazed I’ve held my own for much of that time. It was probably sheer determination.

An all out effort is being made, or so I’m told, to find a place for me to live that is at ground level so I may still take advantage of the resources and support of the hospital and its programs for in-home care. It needs to be walker and wheelchair accessible. I’ll be perfectly happy with only a room and a bathroom, it’s really all I need, anyway. So far, nothing new on that front.

I want to get a new cell phone carrier because the Sprint Network isn’t very good here - neither 3 or 4G - while all visitors with either Verizon or AT&T can send and received text messages and voice calls from my room, I cannot do so with Sprint.

I tried various ways of getting a new service yesterday, but to no avail. I wanted to have the new phone shipped to the hospital (since they must be signed for) and that wouldn’t do.  They don’t like  different ship to and bill to addresses. Attempts both by phone and online were unsuccessful and I can’t leave the hospital to be at the apartment to sign for a mere cell phone. Work on this front will continue today.

End-of-Life issues were addressed yesterday with positive input by all involved - for once! Kept the Notary busy for the best part of an hour and had a room full of witnesses to get the paperwork done and out of the way. I felt great relief when all that was signed, sealed and delivered.

Sidekick, Debbie, arrived from the hinterlands to visit and doubled her efforts by being a witness on the legal documents. Linda was here, of course. Nicole showed up with more snack-stuff (what do you expect, she’s Italian!) and a fave nurse stopped by for a few minutes before he had to attend a meeting

Spiked one fever yesterday so that was clearly a step forward. Pain was also diminished for most of the day. PT arrived for our daily walk and I do believe I had more energy than she did. 

Just keep swimming, just keep swimming!

The appetite is no stronger and the sense of taste hasn’t improved, but I eat what I can - not much - then there are all those snacks…
Today I will continue to finagle a way to a new cell carrier, and continue preparations for Linda’s trip to Ireland next week. I hope to have everything - all the little bits and pieces that the legal eagles demand that can drive one to distraction - in place before her flight leaves next Wednesday.  By that time I hope to have news regarding new digs, a place to call home.

Thanks to everyone for their thoughts, prayers, and good wishes. Each and every one makes me feel just that much more human. You have no idea how much it means to me.

And so it goes.

Wednesday, October 8, 2014

A Note From Hell

Two CT Scans again yesterday, this time to find out if anything grows within my head or chest. (Think of Fungus.) Find out the results today.

Patient Care Services will be sending someone to chat today - if I can keep the fevers down - to plan for my needs if I am released. No, they’re not sure that’s going to happen until they see the numbers. And what degree of “mobile” I’ll have moving on.

Only spiked a single fever last night and I feel stronger today. Although walking is difficult, I tire easily, and the calves hurt almost immediately, if I build walking strength does’t mean I will be free of a wheel chair.  Grim future, that is.

The Locos Guys were in for a long visit yesterday, as was a friend from the previous life. The visit with the locos guys was fun and serious at the same time. They are still holding my job for me and really wish I was back. Seems they’ve had a homophobia issue with new summer staff this year.  And no one to turn it around.

It was great to visit and catch up on the daily goings on at the restaurant and good to know they would have me back, if I could ever return.  That’s a few positive things to draw strength from right there. Today I received a massive flower arrangement from the guys and the staff.  Nice touch. Made me cry.  Jeez, what a sap!

Yesterday was a carousel of medicine changes. Two of which I had never heard about before. They’ve also changed the doses and times of the pain meds, so I don’t have to writhe in pain for the in-between  extra hours.  Spreading it out in smaller dosages for shorter periods of time proved workable for me yesterday and last night.

Woke up once and received the pain drugs quickly and returned to sleep right away before the pain could get a firm hold and shake the shit out of me. See, I’m even getting a handle on Med-speak. (grin)

I’m learning more about the pecking order in hospitals than I ever needed to know. It’s a dirty business and it seems that by my recent actions, I’ve upset the balance and a few are unhappy. It will be a stand alone story when I feel well enough to write it, not today.

Let’s just say that I dismissed the duty doctor and leave it there for now.
Working with Patient Services this afternoon ti sort out Power of Attorney & End of Life Directives.  And whatever else they may think important. I know have the right person to handle that stuff now.  I’m in good hands.

Stuck here for a few ore days, at least. Cannot be I be released as long as I cannot take care of myself in my own place. Tomorrow is another day, believe it or not.

It is what it is.

And so it goes.


Just a Thought: Pain


Tuesday, October 7, 2014

I'm Here. Just Don't Aske Me Where "Here" is.

Still in hospital, same room since admitted on Oct. 1.

Nightmares do not only happen at night.  When the pain strikes it's a real screamer. When the fevers take hold (usually 2 or 3 times daily) I cannot move at all. Can't hold up my own weight. I am in a magic bed that has a massage mechanism to prevent bed sores.. thrilling, that.  Since I am prone to fall due to weakness,  the bed can also be a tattletail. An alarm will sound if I try to get out of bed without assistance. I feel pretty safe when I feel anything at all.

Fevers spiking to 103.5 have left me totally drained. I cannot go home while they're happening.

Probably unable to go home at all to a second-story apartment. I will need at least a walker, possibly a wheelchair.

There are rumors of an assisted living option, but the specialists don't believe that will be enough.

One visitor only since arrival.  That's all I can stand.  Good friend.

Due to the arrogance and stupidity of a new physician, I almost bought the farm the other night. For the next 2 days I wish I had.

And so it goes.

Wednesday, October 1, 2014

Back to the E R

To all you friends and commenters, thanks from the bottom of my heart for your humor, thoughts and prayers.  It’s hard to put into words how they lift me up. 

When the pain is outrageously bad, it’s soothing to think of Sassy Bear holding my hand.  

Yesterday came and went with little change here. The joint pain made me too weak to move around without holding on to something. Fortunately, in my cigar box size apartment everything is within a few feet of everything else. Sometimes even that distance is too much.

Two painkillers made a tiny dent in the pain that shook me to the core.  Barely able to stand, I even had to pee sitting down - then it was a chore to get up again, so I gave that up.

I think I have made the connection between the joint pain and fever. When the fever was at its highest yesterday at 102.F  all movement was excruciating. 

(yes, I know, I was supposed to call 911 if the temp got that high, but I just couldn’t do it)

I took a high dose of tylenol, 2 benadryl, and 2 painkillers, then crawled into bed fighting off chills. I lay on my back very still - thinking about that kiss on the forehead offered by Fearsome -  and eventually sleep took me. I don’t remember a thing. No dreams or anything, which is very strange for me - I dream all the time.

When I woke up I was soaking wet as was everything near or on me. I noticed the pain was gone immediately. Got out of the wet things, dried off, brushed my teeth and headed to the kitchen for an Ensure.  The pain in my joints was gone.

After cleaning up I moved to the dry side of the bed and read, feeling more relaxed and relieved. The sheets will get changed soon enough, but not now. Eventually I slept, but again, no dreams. 

Another high fever has hit, so I guess I’m off to the ER anyway. I am hardly ambulatory at this point.

It is what it is and I’ll take it as it comes. 


Back to the ER

Tuesday, September 30, 2014

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