Home, Hospice, More Updates and Revisionist History

There are these little tidbits I’d like to share, or at least pass along. Warning: May be long for some readers.

My apologies for not answering comments or reading the blogs of others, but dope and high fevers will do that to you, if you get my drift. It didn’t seem that my comments were required at the time. As time goes on and my life (hopefully) begins to stabilize I can find a remedy for that omission.

Just as the Flu was making like Sherman in its relentless march through my body to the sea, two new things popped up (no pun intended); glands in my neck and throat began to swell to the size of large duck eggs. Suddenly I couldn’t move my mouth and the jaws wouldn’t cooperate. The mouth felt as if I were chewing on razor blades, all tiny cuts therein, so sipping anything other than water was a no-no. Another IV antibiotic was called in for that one - took 5 days before jaws would move so I could eat solid foods again.

I lived on water, Ensure, Magic Cup, and ice cream. Even cooked fruit caused the glands to react and stung my mouth like hell.

As the neck glandular swelling receded a new pain and swelling in my groin appeared. Ultrasounds, and x-rays later discovered that I have a hernia - again swells to the size of an egg. Have to wear a special belt whenever I am sitting or standing.  The egg disappears into the intestines when lying down and there is no pain. Tempting, but I can’t allow myself to buy into that scenario. I need to regain my strength. 

The Site Meter visit counter died suddenly last December and the replacement is one of those free things that counts every hit, not only  the extended visits.  So, just know that I am not so popular as it may appear.  But you knew that already.

I have to work on the info for the Funeral Home (payment in advance, no kidding) for the what will be done with my remains and the info for the death certificate as well as any obituary I may want to have published.  Yes, all paid for in advance. I guess to prove in some bizarre way that I am not play-acting and this is the real thing.

And speaking of Obituaries - or as in this funny but sad case a pre-obituary - there is THIS revision of history I stumbled upon this morning and haven’t decided just how sick, sad, poorly thought out and written, and over the top it really is. I’ve never read a pseudo-obituary. That said, especially where the writer gives themselves more ink than the supposed subject of the piece. This from a person who lives in the past, loves to play the put-upon misunderstood martyr in all situations. 

In any event, he becomes the larger-than-life martyr with each retelling of this tale (it’s been reincarnated a few times on his blog) because well, it’s all about him, after all. I guess I ought to be angry, but at this stage what’s the point. That would take more energy than being sad for the man, which is more than he deserves. 

At this time when my health is fragile I prefer people in my life who love, respect, and care about me. Unfortunately, this person isn’t one of them. 

Anyone involved in the retelling of this sordid, long-forgotten anecdote (supposedly about the subject of the obit although any connection is a vague stretch, indeed) is either long gone or have long ago forgotten the original childish situation.

Anyway, it could be your laugh of the day.  Your choice.

My walking stick has arrived just in time for my release from hospital. The one I really had my eye on was made in Ireland out of traditional Black Thorn, was a bit expensive and would take 4 to 6 weeks before being dispatched. Of course, I couldn't wait that long, so this one will do me well. In three sections it is quite sturdy and a full 55’ tall when screwed together. It comes with a canvas bag and collapses to 18” sections.  I love the thing. As I said in an earlier post, I didn’t want a traditional cane, but rather a hiking/walking stick for more stability and security. And here it is.

Meals on Wheels will be set up tomorrow or next day helping to provide 1 to 3 meals daily, and the weather is supposed to warm up by week’s end. After being in a germ-infested, temperature-controlled environment for so long it’s taking me a while to get used to real fresh air and the cold temperatures. Truth be told, it’s in the 40s but very cold to my tired emaciated old body.

Every hour I push myself a little harder, a little farther from my comfortable cocoon to do more for myself once again. That under the care of Hospice I get to self medicate is a luxury beyond measure. No more having to wait an additional 3 hours before the hospital computer tells me I can have pain med is a boon to me and all mankind. I don't abuse the privilege, but it's nice to know it's there. 

I just read that Hospice will provide Oxygen if needed, as well as one of those emergency medical alert systems (like that annoying “I’ve fallen and I can’t get up” thing) so I’ll find out more in the coming week as I get settled in to this new living situation.

Just as I wrote that last bit a phone call came in from Hospice - it was a daily check-in to find out if all was well or if anything was needed. 

The fact that I need someone to shave my head (after 2 months it’s very scary) was not included in their offer of aid.  The last time I shaved was before the shoulder dislocation, when I was able to lift my arm above my head…not any more. I’ll have to figure out something else, is all.

Hell, I’m amazed I’m still here and back at my own place, for however long I’ve got.

If all goes well and my strength improves I will be having a lunch of Fish and Chips with a pint of Newcastle Brown Ale with Linda and Jeffrey tomorrow. To say I’m looking forward to the outing would be an understatement. 

“Do what’s necessary, then do what’s possible, and suddenly you find you’re doing the impossible.” Anonymous

Still Amazed.

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Miles and Miles of Heart

Six weeks later, still in hospital, but the anti-fungal has destroyed the heart fungal infection after 6
weeks of treatment. I've been told that most hearts would have just given up and out, but for some reason, I'm still here.

A number of folks I have known in the past have died over the holidays and yet, here I am.

Just began to feel better and now I've got the flu.  Can't seem to win any which way.

The plan is to go into rehab for a few weeks after this flu takes its leave of my poor old wasted body.  We shall see.

Stay tuned.  It's been an amazing ride and it ain't over yet.

Amazed
*

New Year Update

First, thank you to Calvin for spending some time with me on New Year’s Day. It was a very pleasant time and a joy to meet him in person. Hope we meet again under happier circumstances this year.

Fevers are fewer these days.

Meds are fewer now, too. Mostly IV stuff.

When released, will need to be infused daily with anti-biotic and anti-fungal med.

PT continues to help with the walking and stairs.

No need for oxygen right now.

Eating to gain weight - not much success, so far.

Found more PERN books to hold me over and keep me relatively sane. Since I’m awake at all hours, I keep the Nexus 7 charged at all times.

May be out of here before the weekend, but don’t know where yet. Linda returns from Holiday in Ireland this weekend, so I’ve that to look forward to. 

It’s been suggested that I find a tasteful walking stick (not a walker, please!) to help my balance when I’m out and about.  Something to go with my style, you know - - vertical.

Will ask Jeffrey to scope out retailers to see what they’ve got to offer. I don’t want one of those cheap, aluminum medical devices.  Something with a little class that I’d be proud to be seen with in public.

Have met two very nice hospital employees recently. Both Latino and both anxious to talk about being gay in Rehoboth. Very sweet guys. Keep me occupied for an hour or so, which is damned nice of them. One is a CNA and the other works in Maintenance. They say they’ve been praying for me since I arrived last month. Little surprised by those remarks, but I’ll take it.

People never cease to amaze me.

Still amazed.

*

Hi! Remember me?

Why, Hello there!  Haven’t seen you in a while and it’s just as well that you haven’t seen me.

There’s no amount of Max Faxtor on the planet, trust me.

Way too much has happened in the past 3 weeks and I couldn’t remember the dates if I tried. I do know I am on another big batch of antibiotics as well as anti-fungals now.

There is a fungal infection around the heart and the pneumonia just doesn’t want to leave me.

I am now on oxygen, too. Only 2 litres, but still enough to be annoying and in the way.

A couple of the tests were invasive, so even with the MAC a few feet away, there was no energy to write anything coherent and informative

That’s all I’ve got for a medical update for now.

Although I’ve not been online for the holidays, I’ve thought about many of you, very often. To those who’ve stayed in touch even dropping a note occasionally - a special thanks. Your words and thoughts kept me going when the pain (or painkillers) almost let me down.

Don’t know what’s in the future but without a living space on the ground floor, I won’t have one any time soon.

I don’t have an iPad here, but you folk with FaceTime might me hearing from me via my iPhone. I hope you don’t mind.

I’m stationed in room #224A (don’t know how long) at Beebe Medical Center In Lewes, DE.

I’m drugged a lot so I sleep a lot.  Sorry about that, it’s what keeps me from sitting at the keyboard and writing. 

Suffice to say, I miss you all and think of you often. If, for some reason I can’t get back online again for a while, I want to wish you all a Happy New Year.

Didn’t think I’d get this far!!!

I am amazed.

Reprimands, Appointments, Arrogance

I’ve been reprimanded for using the word “burden” in the last post. I am sorry. This is so very hard for me and sometimes I fall back into the old thinking. Were I a caregiver I know how I would feel hearing that word, but it’s very difficult to project it onto others. I will make every attempt never to use it again. 

The appointment with the Orthopedist went well. Given that we were both awake and I was only slightly sedated we were able to rehash the events of Tuesday night. He’s really a nice (read handsome) man and over the past week had educated himself to my case.  He asked a few questions that had puzzled him, but all went well otherwise.

He set up an appointment for a CTScan for this Wednesday - conveniently after the Labs and the other Dr.s appointment at the Center. Even set it up at the Imaging Center next to the Cancer Center.  Couldn’t do better than that.

I’ve an appointment next Monday to meet with the other surgeon who will aid in the cutting up of my shoulder, removing the broken bits, and repairing any damage.  You know, a few years ago I would have cringed at talk like this, probably gotten physically ill, but now it’s like I’m just another piece of meat.  And believe me, that’s what I feel like.

The sling is to remain in place and the only exercises are to strengthen the hands, fingers, wrists. That’s OK with me, because gravity begins to set in after the sling has been off for a while and it feels like the shoulder is being drawn towards the floor. I purchased a rubber ball for the purpose of exercising and use it absently while reading. 

Finally made an appointment with the attorney to update the Will, etc. only to have her call last evening to cancel that one and try to finagle another one.  She got all huffy when I told her the suggested dates wouldn’t work for me (she actually sucked her teeth, you know, that “tch, tch” sound a few times) so I explained the situation - just like Vivian Leigh I am dependent on the kindness of strangers for things such as transportation these days.  

When I finally said I couldn’t understand the problem, that her office hours are supposed to be 8 am to 4 pm Monday through Friday, she really got pissed, almost to the point of raising her voice. So I gave her specific days and times that are usually convenient, told her to work around that, then call back so as to confirm something with my friends and driver. She was not amused.

As Archy would say: “People may think they amount to a great deal boss, but to a mosquito they’re just something to eat.”

I was exhausted and went to bed soon after. She is another one who used to be a friend in my previous life. So, there’s that.

I am amazed.

*

After the Fall. What Now?

Taking the fall, literally. Typing this won’t be easy, since the left is my dominant hand. In 68 years I neglected the education of my right hand that it is now practically useless. I manage.

Appointment with surgeon is set for Monday hopefully followed by a quick appointment for the surgery.  I can only dream.

Since the fall I’ve noticed that I’m very prone to balance issues - more than I originally thought. With two hands to help keep balance and remain steady, it’s not as obvious. But there are any number of times I could have taken the same kind of tumble here - just not conscious of the danger.  I am now.

The ER doctors kept shooting me up with pain meds. It took three tries and ultimately a call to the Orthopedic surgeon at 1 AM to reset the shoulder. The third set of x-rays he ordered show a piece of bone separated from the main bone, so the surgery.

Of course I was in no condition for Labs on Wednesday. When they were done Thursday the red cells were again down enough for 2 units. Blood was delivered overnight and I sat for 6 hours receiving while very doped up. Back to bed when I got home. Even in the sling the arm is very sore and the hand very weak. 

Though I took off the sling this morning to make a coffee and change shirts, it will go on over a fresh shirt and I will spend most of this 4th day of healing in bed reading, or sleeping. I do not need anything else. Yes, this is frustrating, but it is what it is.

I’m becoming what I wanted to avoid - a burden on those taking care of me - and so I’ve got to pull back some, do more for myself. They’re already blaming themselves for this fall and that will never do. It could have happened anywhere - even in my apartment.

Sure the whole thing sucks wet monkey ass, but it’s done and that’s that.

I am amazed.

*

Apartment Search Continues

I came upon a listing for a rental nearby on the ground level with off-street parking.  As I’ve mentioned before, it’s slim pickings out there. Only a few things wrong with it. Rent is more than I can afford, even if only $25. more. It is a 2-bedroom mobile home, I only need one bedroom. That’s quite a large space to heat with the winter ahead and I don’t know how well insulated the place is. With the compromised immune system, sensitivity to heat and cold is more pronounced. 

The other monthly expenses include water, sewer, and trash pickup. I already pay for electricity so that’s not an extra burden in itself, unless the heating system in the place is also electric. Then it could be a killer.  I know.  From the published image above the place looks clean and neat, well kept.  Yes, but at what expense?

The other issues include snow and ice removal - can’t do that myself - and the Verizon telephone and DSL wiring infrastructure is very old, so I may not have high speed access to the Net. This was a problem when I lived in that area about 6 years ago.  When it rained, snowed, or flooded the phone lines went down - sometimes for days until things dried out and techs could work on restoring service.

At any rate, I’ve called and left a message requesting the approximate cost of each of the added expenses above. I have little hope that everything will be within my budget. Even less hope that I’ll find something affordable and livable any time soon. My hope is to continue to gain strength and weight, get through the dizziness balance issues, navigate the stairs more than once rail, and drive my own car again. 

I am amazed.

*

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.

*

New Month, New Day, New Tarot Cards.

I was amused, though not shocked by theTarot Card for the Month of November.

I was quite taken aback, however, by the card for today, 4 November, 2014. Both are on the money. That said, I am still waiting for my reading from Dr. Spo, unless he sent it and it went into the junk drawer.

I am slowly getting used to being back in the real world and though I tire easily I find I can accomplish more than I imagined. My body clock is still wacky - waking up for meds in the middle of the night and all that - but it’s slowly getting back to it’s own rhythm. 

The visiting nurse showed up yesterday to check my vitals and check my overall outlook for the future.  Big mistake, that. Her patient information was riddled with inconsistencies and outdated medication data. I had to bring her up to date. Two hours later, she was out the door with a promise to return next Monday to check progress and perhaps discharge me as her patient.

Hospital fashion accessories.

Unpacked most things from the hospital, called for an appointment for Lab work at the Cancer Center on Wednesday morning, and promptly needed bed rest.  Not that strong yet. Slept through until 3:30 am today.

Felt stronger this morning; friend Jeffrey took me to the Polls - yes I voted and surprisingly it was crowded - then we decided to go out to breakfast. A first time for me in many months, and most enjoyable for us both. Gave me a chance to be out and about while we caught up on news and local politics as I realized I didn't have to wear the isolation mask, and had a pretty strong appetite for a change. It’s about time. Seems I’ve lost over 30 pounds, not the 20 pounds I had suspected. 

While he had me out and about anyway, he took me to do some light grocery shopping for things that fill in the gaps, like (canned/frozen) fruit, puddings, bagels, ice cream, juices, and even some cheese. I have been craving spicy sausage, cheese, and crackers.  Now I’ve got it.

After over 3 hours it was time to get back. The legs took to wobbling and balance began to go west, if you get my drift. So, he brought me home, brought the groceries upstairs, and helped me put the refrigerated items away before he headed back to the polls where he is on call this afternoon and evening.

Linda’s had car trouble, so I doubt I’ll see her today, but we have talked by phone and text. I’ve offered her my car, but she’s ignored the suggestion. I guess she’s afraid it might be needed in an emergency if I needed to go back to hospital. I don't see that happening right now.

She has taken it upon herself to organize every aspect of my daily recovery and I cannot tell you how comforting it is to know that. She sent over another container of her rich, meaty Irish stew yesterday, so I have another 2 home made meals that only require heating up for a minute or two. Nice.

I have part of a rotisserie chicken left and just might scrape up the energy to make a chicken noodle soup later in the week.

It is a perfect Autumn day with temps in the 50s - 60s, which is good luck for me. With the rash on my feet and legs it’s impossible to wear long trousers, my street clothes consisted of cargo shorts, long sleeve shirt and Dos Locos Hoodie. I was toasty enough and the cool air felt good on the rash and legs. 

Now, I’ve gotten out of the street clothes and into sweats, am about to crawl under the covers, maybe enjoy a nap. A lot was accomplished today in a short time, it seems more like a whole day has passed, it's only mid-day.

I am amazed.

*

Awake

Arrived. 

Late afternoon.

At the old apartment.  don’t ask.

Weak, elated, overwhelmed confused.

Walking in the open a startling contrast to walking hallways. 

New Meds to supersede old Meds.  No energy to sort it out then.

Clean apartment.  Clean, fresh sheets.

Cold and bewildered. Very weak.

Had a cup of soup and was put to bed.

Glorious sleep.

Awake now. Time to unpack, regroup and reassess.
Only just realized that the clocks weren't turned back one hour. Bother!

Too early for such activity. Rest more.

So much to write about. Get thoughts organized first.

I am still here. 

Amazing.

*

Dark & Stormy Halloween and Visit to Hell

Sassy commented; “when you’re going through hell, keep on going.” Well, in the past I’ve been told that I do that, but also have a tendency to stop and take a long look around before moving on.  I suppose it’s like there are times I truly ‘want’ to remember and consider, so as not to miss anything.  Sick, no?

Lungs are clear - no more pneumonia. Blood count is up (without outside intervention) - I am no longer in isolation. Though the port is still accessed, I am no longer receiving any IV fluids - I can walk freely without dragging around that cumbersome “tree of life” with me.  No more oxygen necessary - lungs are at almost full strength and capacity.

The vicious red, fungal rash on my legs and feet is finally disappearing.  Having been properly diagnosed a week ago, the correct meds applied, the skin is just about back to it’s original color and the itching is all but gone.  Now I hope I can wear long trousers, since it is Autumn here, after all. The rash doesn’t take to being rubbed against heavy fabrics and is barely content with a light sheet covering them at night.  

Waiting for PT to sign off on my ability to climb stairs without adverse reaction. Considering the restrictions set in play in my last post.  Still, something is better than nothing - most of the time.

Rumor has it that I might get sprung either today or tomorrow if the stars and planets align properly and that I may just be able to return to my old apartment while I search for a place on the ground floor. To transmigrate at a future date…

We shall see. 

I had a delightful student nurse with me all day making sure I did all I was supposed to do as well as keeping me company. Abby did a wonderful job and will be with me again today for 4 or 5 hours. I look forward to the diversion since she’s a delightful walking companion as well. 

The locos guys are in Mexico today, Linda is working a double which means I won’t see much of her today or tomorrow. In honor of Halloween I did ask her to bring in a few boxes of decorated cupcakes for the nurse staff this morning. My fear is the staff will arrive in morbid costumes and we won't be able to tell them from the real patients.  Should be an interesting day.

Linda has promised me a 'Dark & Stormy’ when I finally get out of here.  So, the sooner, the better!

I've got to run over and see if the lovely and talented Dr.Spo has done my reading as promised.  Then I'm ready for breakfast and the rest of the fabulous day in Spa Beebe in beautiful downtown Lewes, Delaware. Don't hate.  It's how I roll.

And so it goes.

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Life and Death are Simply Wearing Me Out!

Things on the apartment search are moving quickly, too quickly to keep up with. Two of the

apartments found on Craigslist have already been taken, am waiting to hear about 2 others. Learned that moving in with someone with pets would be borderline acceptable.  No cats, birds, ferrets, etc.  Only dogs that are primarily indoor pets, are clean, will stay off my bed, etc., will be considered

Another evaluation by the PT folks today, one more tomorrow, and now they’re talking about allowing me to return to my 2nd. floor apartment temporarily as I continue to search for one on the ground level.

The catch is that I’d be allowed up and down the stairs once daily and my occupational therapy would be limited.  Though in what ways I do not know.

My case manager is doing her damnedest to keep me in the medicaid link so that I am eligible for additional long term home health aid. She spent half her day on the phone on my behalf today.  Every time I see her my personal file, usually tucked under her arm, gets thicker and thicker. 

Medicaid sent a 1/4 inch thick survey/questionnaire to Linda that she was supposed to complete and return before this weekend. Problem is that she has no access to most of the requested documents while most of other info seems to have nothing to do with her role as my POA.  Gave it all to the Case Manager, Suzanne today. She didn’t bat an eyelash. I would have been bonkers in that situation. 

If I am released from here soon, the first thing on my gay agenda is updating, sorting, and reformatting all the medical documents, then put them all in one easy-to-reach place for quick access. 

The second thing is to prepare the paperwork to make Linda the Executor of my estate. I thought that was one of the documents we took care of 3 weeks ago, but that wasn’t the case. POA ends when my life does.  Clearly, that’s not good enough.

Gather more data about assisted living opportunities and their costs.  Seems this is one of those loose ended gambits that varies from state to state, usually with the person needing assisted living getting virtually fucked (and not in a nice way) due to loopholes and financial shell games.

A new Cell Phone Carrier.  If this current experience has shown me anything it’s that good cell coverage is important in critical situations like this. I need a more reliable carrier and I find that Verizon is the best around.   Though their level of suckitude is beyond measure, they do have to most reliable network around here. Granted, I’ll be paying over half again what I’m paying now, but what I am paying didn’t produce a signal or wifi for texting. Time to bite the bullet.

Probably the most pressing issue about being back in my own space is the inability to clean, do laundry, mop, dust, scrub, change sheets, etc., on my own. I know it will be almost impossible now, but Linda has told me not to worry. If the Home Health person doesn’t do it, she will see that it gets done, somehow.

Having been laid up for a month I have no idea what I can and cannot do for myself anymore or how much stamina I will have when sprung initially.  Still, Linda says I am not to worry.  So I won’t worry. Well, maybe just a little.

There were two huge dark chocolate bars waiting for me when I woke up this morning. No note or card. Just one 60% cacao and the other 85% - 100 grams each.The have to be from one of the nurses, but from the night crew from last evening or someone from the day crew today. And, no one will tell me.

I’ll find out sooner or later - or not. Meanwhile I will enjoy the chocolate and thank the Universe that such a kind person thought of me.

And so it goes.

*

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.

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Got to Admit It’s Getting Better…

...A little better, all the time.

I wake up every morning with a song in my head, I woke up singing this song this morning, so let’s hope it’s a good sign.

Second day without a fever, little appetite, and no news on the new digs front. I’ve been sleeping a little better, more relaxed; although I sometimes feel that I am sleeping away what last hours I may have in this life.  Still it’s good.

Two friends from my previous life visited and were subjected to the doctor’s tirade about my “living on borrowed time” but if it bothered them, it didn’t show. Personally I was relieved that he finally went public here in my room with strangers in attendance so that I could have a chat with the attending nursing staff. 

End of life issues will be openly discussed in this room from now on.  No more “we don’t talk of those things here.” I won’t have it. I’ll do my best to get well enough to get out and on my own, but without denying what lies ahead.  They will adjust or move on. My sensahumah remains intact, so don’t fuck with my life.

My friends had just left the Memorial Service for an old friend who passed away a few weeks ago. He was Ron’s (Retired in Delaware) lifelong buddy Big-Bob and he had many friends here. Of course, I was stuck here and in this frantic environment had forgotten the date. Before sleep took me, I brought back memories of some of the good times we had together, then said my good-bye, as well.

Received a phone call from regular reader, Calvin, the other evening (don’t ask which one).  It was a joy to chat with him, to give voice to the comments and kindness he’s shown.  

Linda returned from Ireland and stopped by on her way home yesterday. As is usual for her, she brought back an Irish Medical Kit containing 3 different bottles of Jameson’s - if I’m ever in need. (grin) Of course, that could be any minute, as I am sure you’ve guessed.

My room has become a sort of safe-haven for some of the nurses during their shift. If things get too hairy at their station, they just come in here, sit down, and we make fun of the world for a few minutes. This seems to help restore their sanity allowing them to face another hour or two.

One frazzled nurse came in looking quite scared. A drunk had just been dumped on her who happened to be going through violent withdrawal, threatening to beat her up if she didn’t let him up so he could find his “vodka to get his morning off right.” When he finally lunged for her, she took off and came over here.  I asked about the police and if there was a guard to protect her from this crazy guy. 

She leaned her head back, barked out a laugh and said, “yeah, there’s a guard. This guy is 6’4’’ and the little bitch guarding him is around 2’3”. What the hell can she do? Maybe she could hold onto his ankles as he dragged her around the room!” Then we both laughed at the image of the prisoner and guard together.  Then we laughed some more.

Want to thank Ann Marie & Todd in Philly for the lovely card. It was sent to the apartment about a month ago and I just got it yesterday.  Thanks for thinking of me.

I hope I have energy enough today to read (catchup on) some fave blogs. It’s been a long time. But don’t hold me to it. It’s far too easy to simply read a book on the Nexus7 and fall asleep as needed. I wouldn’t want to fall asleep, drop the laptop and break it. 

Maybe I’ll post again after I find out the current status of the blood work and the antibiotic infusion.

And so it goes.

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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.

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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.

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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

Drugs and Willpower

Drug induced confidence and sheer willpower made it possible to get to the pharmacy late morning, yesterday. The pharmacists arrive late on Sundays, so there was time for me to medicate and prepare myself for the 2-mile drive.

Along with the regular meds I knocked back a double painkillers and megadose of Tylenol to help get me there and back again. 

Waiting for the scripts to be filled (the pharmacist has been taking good care of me lately - I supposed seeing the list of medications I’m taking he knows I’m in a difficult struggle and does his best to get me in and out quickly) I sat with a glass of iced water offered by the pharmacist’s assistant. 

I felt the energy seeping from everywhere. My legs began to throb and felt as stumps, joints ached, I was sweating bullets after the walk from the car park to the pharmacy.  Why do they put the actual pharmacy in the very back end of the store? The counter seemed miles away and the walk took forever.  

The new prescriptions filled and paid for, I weaved back to the car trying not to look as if I’ve been on a Lost Weekend. Traffic was very heavy, thanks to the beautiful Autumn weather. so I had to concentrate on asshole drivers as I drove home.

I popped the first Levaquin (daily antibiotic - 1 a day for 10 days), the first much needed Ativan, followed by 2 heavy duty Tylenol then dropped onto the bed. Too tired to remove my clothes I managed to kick off my shoes and lie quietly waiting for the meds to kick in to offer some relief. I fell asleep in short order.

Temperature was 99.4 when I was able to wrestle myself out of bed to remove my clothes, so no visit to the hospital for the present. The joint pain had also subsided (except for the knees, still sore from the fall) making sitting up and walking easier.

Wolfed down a bowl of my wonderful chicken soup then a big glass of water.  I drank two more - one after the other - and slid under the covers once again. 

Read and slept as needed letting everything else wash over me.  Though I still had no appetite to speak of, I downed the last of the soup with an Ensure chaser, took the evening meds and hit the sheets once again.  This time for the duration. 

Today the bruising continues to heal. Still very weak, but so far no shortness of breath, chest pain, or dizziness.  I plan to make this day a duplicate of yesterday, with the exception of driving anywhere. I will read and sleep as I feel the need and forget about everything.  All else is out of my control, so why bother?

I face a meal of one of those frozen dinners, you know, the ones that will survive the next Ice Age, but I am plotting carefully, hoping to gather enough energy to make another soup.  A beef, vegetable with rice this time.  Again, because once prepped and bubbling there is no other work to do. It simply cooks itself.  I would love some fresh baked bread, too, but that’s too much to ask for at present.

Any regular reader knows how I love to cook my own food. I especially love doing recipes that remind me of my childhood in the south.  Most of those dishes are energy-sapping, time-consuming, and labor-intensive. Readers must also know how vulgar I feel eating something pre-cooked and frozen  It’s bad enough that I have to eat only canned or frozen fruits and vegetables. 

They will also know that I must really want to make it through this disease if I am willing to eat any of that stuff to survive.  I can only hope that eating that crap doesn’t do me in first.

And so it goes.

*

14 Hours Saturday

 Slept OK Friday night, but achey at times, painful enough to wake me up. 

Spiked what is called a ‘neutropenic fever’ early Saturday and all energy drained from my body. Any idea of hitting the pharmacy for the scripts was blown away.  Every joint in my body ached with any movement. 

Took my temperature - it was 101.6 and way beyond the acceptable limit, especially after being so recently transfused. Friend Linda took me to the ER where I told the story of the disease, the fall, and events of the past week - three. more. times.  Tiring, that. Finally taken to an exam room and put on a gurney. Fever now 102.

Heart monitor attached, oxygen administered. Blood cultures were taken again as well an effort to reduce the fever.  No transfusion until the fever was down.

Taken by nurse Michael.

I struggled to will my body to respond to the big dose of tylenol to bring that temperature down. Fever finally abated to 99.2 when the blood was ordered. If the fever hadn’t broken, I was to be admitted to the hospital until it did.  

Blood had to be ‘imported’ from Wilmington because of the newly discovered antibodies involved due to the constant infusions. That took 5 hours. They got me rehydrated and left me alone to read or rest.  Sleep, of course, would not come. 

The suggestion was made to introduce more platelets, but I received them only last Monday, so the doctor rejected that idea. 

At this point it would appear that unless some miracle takes place in my body, I am living on borrowed time on the blood donations of others. Things will only get more complicated as my body begins to reject and finally refuse to be cooperative in keeping me alive. Borrowed time, as it were. Didn’t get in until 11 last night. Fourteen hours later.

I’ve had little to eat since Friday, but I’m not hungry. Only thirsty. Pumping my body full of fluids all day yesterday slaked my thirst temporarily. It’s back now.

Feeling slightly better this morning, though still weak and a bit achey. Temperature a bit elevated, but no headaches - yet. If I spike another high fever today, I will need to be admitted to the hospital.

Who knows, for how long. 

I hate writing about this, but it’s the only way I can express myself and explain what is happening in the most sane way possible.  I am not a medical professional; so much of the jargon is way over my head, but I get most of it in the abstract. The prognosis isn’t good.

I guess I ought to be concerned about the apartment, my things, and the car.  I am not. They’re only things, tools and the like. They don’t mean anything to me, really. They are nice to have, but that’s that. 

For the first time in my life I am not worried about paying bills, either. Anyone who knows me knows what a stickler I am about paying bills and my credit score.  Always have been.  Not anymore.

The universe has me in its embrace and I can do nothing but my best to try to heal and hope the body will respond.  If it’s too late and the old body can’t take any more, then so be it.

I will have to be in great pain, or discomfort before I submit my self to hospital care. If I go into the hospital the laptop will go with me. I fear I will be there for a few days, at least, maybe longer. If I fall that low - physically - I will likely give in to their demands. 

At present, I am not living life as meant to be. I live as a caged animal with little contact with the world; isolated from everything I love and need to remain sane and human. Just between you and me (promise you won’t breathe a word to anyone else) I just want this long nightmare to be over. However it may turn out.

Like that old saying: Pain is inevitable. Suffering is optional.

And so it goes.

A Step Back, Then Forward.

Written 9/26 - posted late.

I’m back where I was earlier this week.CBC was low, platelets held their own at double what they were Monday. Another unit of blood was ordered for today. 

Keeping with the feelings of the past few days I was tired, chilled, weak and breathless when I arrived this morning Spiked a high fever of 102’ so while I waited for the cross matching they gave me 2 tylenol and covered me with warm blankets back in the Infusion Center.

The consensus is that most of the blood received earlier has been dispersed into the system in the form of the huge bruises (which have spread wildly); little getting to the heart, hence the extra unit today. When I arrived my pulse was 133 and I was panting heavily.  No, there wasn’t a good looking (read Hunky) gentleman anywhere in the vicinity. 

Felt terrible most of the morning until about half way through the new blood when my breathing calmed, chest relaxed, and chills subsided. Fever finally came down to 99.3 (my normal these days), pulse dropped to 103, and I was fairly clear-headed when I left for home.

I have a new prescription (just what I need, another one!) for a drug similar to Ativan, which I will fill tomorrow when I feel stronger.  Being a narcotic it must be hand-delivered and signed for at pick up. Too weak to stop this afternoon and do all that walking.

Haven’t been sleeping well all week, either. Maybe I will tonight with the new blood and extra Benadryl.  I can only hope. 

I hope the weekend is one of healing and restful sleep.

And so it goes.

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