Sunday, February 8, 2015

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.


Back To Where I Don’t Belong!

Like it or not, I have returned to the scene of the crimes (all of them) although (again) the powers that were insisted it would never happen. Plans to go directly into Rehab following the heart fungal infection treatment (6 weeks!) were shot down the very day of my last heart treatment. 

Seems the Rehab Center had to be shutdown due to an outbreak of an intestinal infection that hit the residents hard. Now, can you imagine my reaction if I had arrived in time to be forced into shutdown mode and had to deal with yet another attack on my immune system? No, me neither.

The hospital was stunned, but even more-so when a test swab revealed that I had Type A Influenza.  I wrote about this in a brief update recently, so I won’t go into the gory details. The episode knocked me out for another week, the hospital went into full isolation mode again and I became Neutropenic - again.  There went my fresh fruits and vegetables..It was nice while it lasted.

When it was time to reschedule a room in Rehab, there were none available except in the one that NO ONE wants to be admitted to and to which I also declined. 

Suddenly my apartment looked pretty good to them and it was clear they wanted me out of there as I wanted out of there before I was hit with another infection out of the blue.

So, me and my 23 days of necessities for rehab were stuffed into an ambulance and shipped to my old apartment.

The only difference, and it’s a big one, is that I have been registered with and admitted to Delaware Hospice, which ought to make my life less stressful and rest a little easier.  I get to stay home and people come to me for basic care and nursing needs.

The final home admissions interview was conducted yesterday morning - about 2.5 hours - and I felt much better following the meeting.  There is still much I don’t know about or understand and I am stressed enough to imagine that it could all be taken away in an instant (it does involved Medicare/Medicaid after all.) but for now it feels pretty good.

Had an uncomfortable, sleepless, strange night with little rest and woke up to this for my card of the day:
“The middle of the night - you are startled out of sleep, nightmare, undigested thoughts: get up and work out what you can do about it!  It’s dark, and many lights appear; mental flashes.  Nine Swords: a whole gamut of new knowledge and insights - exhausting - get used to them carefully.”

I'm still organizing my thoughts and experiences so...More later.


Tuesday, February 3, 2015

This Flu is the Real Deal

This ain't no weekend stomach  virus that everyone refers to as "the flu"  not by a long shot. Lymph glands infected, and other unheardof glands in the throat make eating, chewing, even drinking excruciatingly painful.

Running two IV antibiotics and almost continuous doses of painkillers.  Just another nightmare in paradise.

More about me later, if I've any strength left. Looks like rehab will begin next week, if it happens at all.

Just keep truckin'.


Thursday, January 29, 2015

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.


Tuesday, January 6, 2015

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.

Sunday, January 4, 2015

Yes...You Bet...

I am awake.
I am in hospital.
I am in pain.
I am aware.
I am anxious.
I have a mild fever.
I am medicated.
I am ready for a nap.

I am mystified as to why hospitals don’t sell health and beauty aids. I could sure use  nail clipper right now.

I'm amazed that it's 2015!

Still amazed.


Tuesday, December 30, 2014

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.


Monday, December 29, 2014

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.

Thursday, December 18, 2014

Lounging at the Christmas Spa

Just setting’ a spell at Beebe Medical Hospital & Ocean Spa in lovely downtown Lewes, Delaware.

This relaxation time was provided by the Cancer Tumor Association and is likely to last 5 to 7 fabulous days. Fevers returned with a vengeance. So far, weather has been fretful and treatments are not coming up to expectations.

....And I'm forever catching myself humming Stormy Weather.

Spending time with old friends here. Am exploring new variations on an old theme, plus giving a test run to a new anti-fungal whose name escapes me now.

Heavily sedated, of course, so can use only a single hand to type.

Hoping for good news soon. If not, here’s wishing you all the joy and love of whatever holiday you celebrate. If it celebrates neither, find another one.

Every day has been amazing and hectic here.  Good things are coming.

I am so amazed.


Sunday, December 14, 2014

Saturday, December 13, 2014

Balancing Medical Decisions

The Friday appointment with the attorney had to be cancelled due to emergency transfusion on Friday morning. I am sure she wasn’t a happy camper when she learned that news. Couldn’t be helped.

Went into full crash mode on Thursday afternoon, so when I called the Center for advice, they told me 2 units were already ordered while we were speaking and since I was already in a crash scenario just continue to chill, rest and do as little physical activity as I could get away with until I arrived at the Center in the morning.

That was easy to do. All I wanted to do was lie quietly so as not be short of breath and be as careful on my feet to be aware of any possibility of falling. Took a painkiller and high dose of Tylenol before sliding between the sheets where I stayed until morning when I had the tedious struggle to get dressed (hard enough with the use of BOTH hands, a real torture test without) and try to be ready when Jeffrey arrived to transport me. He did have to help me with the sling (the dear!)

It all went smooth yesterday and though I was, by this time, very weak and finding it difficult to put a coherent thought into words there was no panic. I had enough trouble following instructions and answering questions posed by the staff. I managed.  I now know that I can go from a moderately low red blood cell count to a dangerously low one in less than 24 hours. For no apparent reason and without any change to normal daily activity.

At least I was able to recognize and be aware of these quick changes nowadays. Glad I made the right decision early enough that no harm was done and the attorney couldn't whine about wasting her time.

Also, this latest blood - O Positive with modifiers for me - gave me a positive kick, or booster and I feel better today than I have following transfusion in the recent past. For this, too, I am thankful.  I am not going to be doing anything crazy, but I feel like I could put on my dancing shoes and boogie around the living room for a bit.

I am amazed.


Christmas Angel Caturday

They always remember those little comments.
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