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.

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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.

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.

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You Got The Part

We Are All Angels

In The Lives of Others.

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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.

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Christmas Angel Caturday

They always remember those little comments.
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Just a Thought: A Stagnant Truth.

How far does loyalty and American Patriotism take you when a young, supposedly heterosexual soldier is ordered to rape (FUCK) anally abuse teenage boys?  Forget whether the acts were performed in front of family members, or not. It’s the very act that matters.

Just following orders! (?) Foul, evil, conniving, self-righteous.  Humans enjoy nothing more than the act of harming other humans

Does it take this sick behavior to finally stop you in your tracks to say, “this, my entire way of life, has been a vast red-white-blue lie.”?  Does it?  Even a little bit? No wonder more and more of our soldiers and hurting. There are secrets to keep, they bought into the lie, too.

Yes, by all means, let’s offer a free ride and safe passage to George Bush and Dick Cheney, but do everything possible to draw-and-quarter the likes of Edward Snowden for drawing attention to their crimes, and others.

All humans are truly pathetic, dangerous creatures. We’d rather harm others who suffered as we have, than to banish that suffering and those who ordered it in the first place.

I am sick.

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The Ring Goes South & That Card Again.

I am not sure whether I ought to be spooked, or freaked (2 very different experiences), grateful and curious, or give myself a slap upside the head for missing something important that this card is trying impart to me.

As you can see in the side bar, this is the card of the month - second time in a row. It has popped up as card of the day again today - the second time in the first 10 days of December.  I know shuffling the deck is not an issue. I am very careful with that, almost religiously so. This is uncanny.

Sat up most of the night in pain reading, or trying to. Between the shoulder, left arm, wrist and the leg swelling, painkillers didn’t have a chance. Pain was so intense at times the nausea kicked in big time. Compazine helped - but not with the pain. There was no way to ignore it. 

So I decided to pull my card for today and, well, imagine my surprise when this one comes up again. Everything I read about it points to having a lovely time, enjoying love and friendships, and lots of happy, strong emotions.  

But, while I’m in great pain?  I think not.

I’m more than half way through my annual reading of LOTR - about midway through The Two Towers - occasionally finding a bit of info that I’ve missed in past years, making one more part of the trilogy fall into place. With the arm out of service I’ve been unable to write these down, but I think I’ll remember enough as some of the characters (or their heirs) play a part of the final book.  I’m reading more quickly and more intensely than in other years. I guess I need more concentration this time round to pull me through.

The struggle to put on clothes begins shortly. Jeffrey will pick me up at 8 for a few appointments, then I have a few scrips to get at the pharmacy followed by a CTScan before I can head home and return to the peace and warmth of my bed.

The storm system moving through has me moving carefully and with someone’s help. Can’t afford to dislocate the right arm now. I’ll be happy when the trials and demands of the day are over.

And so it goes.

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.

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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.

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A Caturday Pun

Ouch! Sorry.
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It Happened So Fast

Oh, What a Night! So much can happen in so little time.

Rain
Rehoboth Beach Christmas Parade
Crab Quesadilla to Go
 Wet Driveway
Call 911 - Cannot use left arm.
X-rays - Left Shoulder Dislocated
Orthopedist Called 1 a. m.
IV pain medication
X-rays - Chip & Fractured Shoulder
Three Attempts at Reset
Sling & Home

Lots to write about when the left arm/hand is functional again.

I am amazed.

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Tuesday Out and About.

Jeffrey was the chauffeur today. Linda had to open the restaurant while the Locosguys are in Mexico, and Nicole was buried in school work requiring peace and quiet for more concentration. It’s raining again, though not the nor’easter weather of last week. We ran the usual errands;  The credit union, dry cleaners, supermarket, and lunch were on the gay agenda as they were all skipped over last week.

An added stop at Staple’s made me wince. I am not a fan of the store or of colour Ink Jet Printers, but for reasons explained here about a year ago, I had to knuckle down and purchase a set.  Neither Canon nor Apple offered new drivers to support my old Laserjet printer.  Not to worry though, with the cash back bonus money accrued the printer cost about $18.00 USD. Now, if only the consumables  were as inexpensive it would be nice.  But, they’re not

Note: The full set of replacement cartridges cost more than the full price of the printer, so stop and think about that for a moment.  It’s cheaper to simply purchase a new printer (complete with a full set of carts) then give away, or chuck the old printer and move on. Sounds silly, doesn’t it?

I prefer laser printers - no muss or fuss - the toner is heat fused onto the paper and there’s no waiting for the ink to dry.  And the printed pages never smear, as a result, crisp, clean results every time. I don’t care about colour printing.  Does anyone care about colour printing in 2014?

Anyway, the ink carts needed replacing and I finally got around to doing that which left the empty, used cartridges with no home. It is now (apparently) a mortal sin to dispose of used carts in the garbage - they need to be recycled - and the only place around for recycling is Staples. So time was wasted as I waited for an employee (scarce even on a weekend and this is Tuesday) who could handle the situation.  There is no place to simply drop-off the used carts and be on your way.  Took nearly a half hour, but it is done.

We saved that chore for last so we could head directly to a restaurant for a quiet lunch. We chose “Go Brit!” for authentic fish & chips, bangers & mash, and a pint of Guinness. The place was quiet and the food light, fresh, and heavenly. No

greasy stuff here. Our server, Andrew, also works at DL but since’s he’s off on Sundays I didn’t get a chance to see him on the weekend. Not being busy was bad for his daily tips, but it gave us an opportunity to chat and catch up.

Seems Andrew is preparing for a trip to St. Petersburg, Russia.  Why in the winter, I don’t know. Why anytime given the current political climate, I cannot imagine.  But, he’s anxious and took off for DC yesterday to pick up his visa to prove it. He’s young, single, has traveled extensively, and knows how to do it on the cheap.  He has a great experiences no matter where he goes.

OK, so I lied.  As we were heading to my place after lunch, Jeffrey convinced me to stop and purchase a couple of cotton flannel shirts, as he had a few weeks ago.  He raved about them, suggested that the cold was going to be upon us very soon and I would be glad for them. We took ourselves to Eddie Bauer where there was still a good selection. We were shocked to find such a huge selection, especially after Black Friday and the holiday weekend. But, you won’t hear me complain. 

Because of the major weight loss it was tough to decide size, so I tried one on.  My stars! It was the softest cotton and most comfortable next to the skin.  I purchased 2 size Large (100% cotton, they always shrink a little) JIC I suddenly break out in fat or something - and headed for home. 

We covered a lot of territory a few hours. I got tired and wobbly, and the swelling caused some discomfort until I lie down and propped them up. With the aid of painkillers the pain let up after a brief time, but the swelling remains for hours. Believe it or not, Benadryl helps.

Linda just called to remind me that she’ll pick me up at 5 pm to view the Rehoboth Christmas Parade this evening at 6 pm from the restaurant. I had completely forgotten that is tonight. I am thrilled, not having seen the parade in 3 years it ought to be fun. If the rain doesn’t cancel it out at the last minute.  

So, another outing and I get to see Linda and Andrew (he works tonight) and perhaps a few more customers I’ve not seen in many moons.  At any rate, I don’t have to worry about cooking supper. I’m sure Linda will make sure I am well taken care of. I remain uneasy at being spoiled like this. 

I am amazed.

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A Magical Monday

No one was prepared for the shock of 75’F and clear skies that blessed us here at the shore on first of December. I thought about sitting on the top step of the landing to soak in the warmth and fresh air coming in off the Atlantic, prepared to spend most of the day in bed reading, as usual.

All that changed with a text message from Linda asking if I’d like to join her for an ice cream cone and walk on the boardwalk in the afternoon. Of course, I jumped at the chance. It might be just the thing to help the swelling in the feet and legs.

When she finished her catch-up work at the restaurant, she picked me up and off we went. First we took a drive to the liquor store so she could replenish her supply of beers and wines depleted during her time in Ireland. She found a new Icelandic brew that had been raved about, so she bought a 6-pack of each of the three different flavors offered by the company, which is new to the US. 

We drove back into town and found a parking spot close to the boardwalk. The jacket I brought JIC it was cooler near the ocean remained in the car. It was a magnificent afternoon and we ran into people we knew from around town and the restaurant who had the same idea. Many were surprised to see me, others surprised to see us together.

Preparations were underway for the annual AIDS Day candlelight march and service of remembrance to be held in the evening.  I was more grateful for the nice weather because for the past 3 years, the weather has been cold and rainy, or cold and windy, making for an uncomfortable experience and a lower turnout than usual.

Initially, the walk was painful aggravating due to swelling in the feet as well as ankles and calves, but that soon faded, became easier and my gait more steady. However, having walked about 5 blocks on the boards, Linda thought it wise that we share a bench, rest, watch and listen to the ocean. It was a little piece of heaven. I soon realized that this walk was Linda's plan to get me to exercise more as well as get out of the house.  Her plan worked on both fronts. Bless her.

I determined I’d walked far enough for one outing, so we returned to the car and drove back to the restaurant. The shifts were just changing, it was about 4:30 by then, so I joined the crew in a Golden Margarita, sat and enjoyed being out for the second day in a row.  Especially in such weather, which was quite a gift for December 1, in any case.

I was getting tired and hungry, so Nicole made up a Bison burger with sautéed onion rings to go, for me. Jeffrey saw me home and it felt odd not to experience leg pain for the first time in months - even walking up the stairs.

The bison burger was delicious. I washed it down with an English Ginger Beer Linda brought back from Ireland. All was right with the world. 

Interesting to note that I woke this morning a little sore in the ankles, but less swelling.  We’ll see how long that lasts. Jeffrey is picking me up shortly to run a few errands that were put off from last week, so we’re likely to stop off for breakfast, or lunch - depending on how long our journey takes.  Either way, it will be fun, and a third day out of the apartment, little worse for wear.

I am amazed.

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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.

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I Remember