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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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.

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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'.

*

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.

*

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.

*

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.

*

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.

*

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.

*

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.

*

Full Of … Surprises

It’s cold, raining, raw, getting colder - chance of snow/sleet/freezing rain tonight into tomorrow and I am one exhausted Big Cat!

Surprises:

1. Heavy rains began overnight waking me shortly after midnight.  I’ve been awake ever since. The high winds and rain have continued all day.

2. There’s a new Hematologist on my case at the center as of today. He seems more familiar with it than even the oncologists on staff.

3. Labs showed the hemoglobin numbers to be in the basement again so two units of blood were ordered - for today.  

4. With the holiday tomorrow infusion had to be done right away. Couldn’t wait, but I had to. It can take hours to type and cross match for my infusions and today was no exception.

5. Eight hours in the infusion chair alternately waiting for the blood product to arrive or being infused.

6. Arrived home to find a message from the new Hematologist asking that I call Friday to schedule an consult with him.  Seems he has an idea for a new form of treatment. Oh yes, something new. If I have the transportation, that is.

So there you have it. I had a grand list of errands to run today - thinking that the Lab results would be just fine and no transfusions necessary.  I felt fine and looked good, too.  That’s what everyone said.

So, no dry cleaners, grocery shopping, credit union (for quick cash), no quiet lunch at a nice little restaurant, and no new flannel shirts. We did manage to get to the pharmacy to pick up the waiting scripts, but that was it for the entire day.

Now I am exhausted, sore, with swollen, painful legs and nothing in my stomach all day but a bag of gold fish, a bagel, lots of ice water, and 2 cups of coffee. Jeffrey made a stop to pick up some prepared fried chicken for my supper.  Turns out the chicken is inedible. Dry and tasteless.  A cold turkey sandwich is on the menu tonight - if I have the energy to make it.

I don’t know what is the more uncomfortable; the suppressed anger, the sore butt and fatigue from the infusion chair, the wasted day, or the fact that it will be next week before I get out to try again.

With the winter weather slowly creeping into the area, those outings will be much reduced or non-existent in the weeks leading up to the end of year holidays. And once again I’ll be a prisoner in my own apartment.

The one bit of really good news came from Linda today. She got the all clear from the Irish doctors and she’s coming home tomorrow.  We are all very relieved by this news. It certainly ends the day on a high note.

I am amazed

*

From Pain Comes Pizza.

Being a shut in today and that’s OK, especially after such a rough and restless night. Leg and ankle swelling made getting into a comfortable position a physical challenge. I sat up most of the night reading; falling asleep whenever I could.

As it now stands, Ireland is going to be hosting friend Linda another week. The results of the original biopsy proved inconclusive so she had to endure another one, having to wait for these results until early next week.  How the results could be inconclusive she says she can’t understand because the chunk of flesh they took out of her was quite large.

Anyway, she’s stuck.  Be that as it may, she told me this morning that flight reservations are made for next Thursday (our puny Thanksgiving - and what it’s become - means nothing to the Irish) so she is planning to come home no matter what the results of the latest biopsy reveal.  One can tell, even by the written words, that she is one pissed off Irish Lass and most folks would be wantin’ to stay out of her way these next few days.  

Jeffrey just checked in to see if I was in need and if I felt up to meeting him for an after-shift cocktail today. I nixed the cocktail idea but asked if he would deliver a small pizza after work from my fave place. He said it wouldn’t be a problem. We’ll try to meet up for a festive cocktail later in the weekend, if possible.

A fresh pizza - delivered! That’s great! I have no beer, but a shot of Jameson’s might be in order. With the swollen legs, pain and weakness, I couldn’t prepare a hot meal for myself tonight, anyway. I am pretty tired of cold turkey sandwiches, of you get my drift.

A nice reward for putting up with the pain. Pain meds following the pizza should put me down for the rest of the night and I’ll be on my feet (literally) tomorrow morning.

I am amazed.

*

New Blood, Jettison of Shorts & Touchdown of Kilts.

One Style of Modern Utility Kilt

Unfortunately, Labs results yesterday told me I needed to be infused. The hemoglobin was down a full point - below the cut off point for my own safety. 

One unit was ordered and the port remained accessed for convenience. An appointment for blood was quickly set up for this morning at 9 am.

Nicole offered to do the honors, even if it is her day off. In return I promised a bit of winter shopping and a stop for lunch at the restaurant of her choice. She giggle and said she’d like nothing more than a burger on the beach if the weather was warmer and the winds weren’t so strong. We settled for something a little less uncomfortable - and indoors.

While I was somewhat disappointed in the outcome of the tests, the up side is that I went 2 weeks without requiring new blood. That and the fact that the platelets remain in high numbers as do the neutrophil count give me hope.   Slowly, but surely…

Patience, please! 

The infusion went well, though a little slower than usual, but I was still ready for lunch about 1 pm. And I was HUNGRY!!!  Enuf said.  

The afternoon flew by after lunch as Nicole and I traipsed around the area scouting out shopping venues for special items she wants to get her grandparents and friends. We had a good time and when we were finally done, I was pretty beat and ready for the drive home - and bed. 

I will be in bed in a few minutes and I’m sure she’ll be the same when she gets home shortly. She’s off the rest of the day, no new homework to contend with until Monday.  Her last class is tomorrow morning so I can assume she is in “chill” mode for the weekend.

Casual Tartans with sporrans.

Following 2 days of outings this week I am ready for shut-in mode, if for no other reason than to address the edema in the ankles and calves.  They are quite large after being on my feet for so long. The Kilt with soft loose cotton socks helps alleviate the itching and redness. I even bought a pair of those Eddie Bauer men’s thin lounging light-weight flannel pants, but they’re still too annoying on the front of the shins and calves.  

So, shorts or kilts are the items to remember for daily dress.  I’ve been receiving many compliments on the kilts this past week or two. So, I have a new attitude towards kilts vs. shorts.  Shorts big and baggie and not comfortable even after their washing and drying yesterday. But none of that is true with a kilt,  so as not to cause additional injury or more pain the kilt wins hands (pants!) down.

I’m totally hooked on kilts now. And…I don’t look half bad wearing one,

Similar Style to my old black one. I love it.

either. I am partial to the utility kilts due to their rugged design, heavy duty fabric, double stitching, and the over all comfortable feel. The "drop" is usually between 22" and 24" and depends on how you wear it at the waist. I'm pretty comfortable with either length, but am more used to the older 24" drop.

So, there you have it.

If you’d like more information on a small reputable company with great prices and the best shipping and customer service, just send me an email message and I’ll get the info off to you.  Or, if you’d like, I can post the info here and you can take it from there on your own. 

I am amazed.

*

Ear-worms, Errands, & Early Winter

This is what I woke up humming this morning. I must say I could play this score all day and not tire of it.  The brilliant Michael Ball & Il Divo - what’s not to love?  Yes, in case you didn’t already know, I am an incurable romantic.  So shoot me!

Jeffrey picked me up early and we set out in the (suddenly) frigid cold weather.  What happened?  Yesterday it was in the 50s and today we’re shivering in the 28’ F range with 20 mph winds!  And…I cannot wear long trousers because of the leg rash. All my summer shorts are in the laundry Jeffrey was taking home to wash for me and the only sweats I have are way too big for me nowadays. Three of me could fit in them. Not a great look, if you get my drift.

So guess who wore a kilt again today? The more I wear them, the more I love them. I wore the Scottish Wool one - and yes, with underwear - along with a tee-shirt under a long sleeve sport shirt and covered all with a hoodie. When he picked me up, Jeffrey thought I was nuts since he was bundled like an Eskimo or a frozen Elf.  Take your pick.

With lists in hand, we were off!

I had sets of house keys made for Jeffrey and Nicole, so they can get in if I’m not up to opening the door, for any reason. I also shopped for a small electric space heater for the bathroom. There is no vent in there for the central heat and the thermostat died in the old heater that's 10 years old. Bought that, too.

With winter making its early debut, Jeffrey wanted to look for flannel sport shirts.  We stopped at Eddie Bauer, Bass, and Dickies.  Finally found one he liked, a handsome plaid and well made; I probably should have followed his lead, but thought I’ll hold off a bit and see how the money goes. 

Hit the pharmacy for a refilled script that has done wonders for an annoying dry cough I’ve had since the hospital. The cough is almost gone completely. Grocery shopping was next then we headed for a few hot coffees and breakfast.

Happily, the wool kilt kept my torso and lower body warm. Because of the strong winds the only thing to get cold (now stop with the evil minds!) was my nose. The old Twig & Berries were fine, thank you. The hoodie kept my head and ears toasty and the feet weren't bothered at all.

Walked in the door around noon to a strange “chirp” sound that Jeffrey recognized immediately.  I was clueless until we walked into the bedroom.  The chirp was emanating from the smoke alarm, (which I thought was electrical since I had never changed a battery in the years I’ve been here) so Jeffrey asked for a 9V battery and hunted down the battery location inside the device.  Thank the Goddess he was here because I  could not have climbed a ladder to search for the hidden pocket. 

It took him a few minutes of huffing and cursing, following wires, setting off the test alert a few times, to zero in on the exact location. Let’s just say the battery compartment is well hidden. The battery power is only used if the electrical power goes off and it functions silently. How would I have known of the battery’s existence?  I wouldn’t. But FIVE years? That's some long-lasting battery.

He grabbed the laundry bag, the last of the house plants, and the new set of keys.  Then he gave me a hug and headed for home.

After putting everything away, I got into bed and took a short nap. Woke up a while ago with leg and back pain, had a quick sandwich for supper and took a pain med. I am tired, so I think I’ll snuggle into bed and read a few hours until I fall asleep.

Another day of adventure and misadventures; and tomorrow begins with Labs at the Center. Not sure I can stand being out of the house two days in a row.

I am amazed.

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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.

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Healing, History, and Helpful Advice

Having taken a painkiller with the evening meds after supper last night, I brushed my teeth and settled into bed. Started a new e-book on the history of Scotland and got taken away for a few hours before feeling the desperate need for sleep.  Just what I hoped for, anyway. Slept like a baby, too. 

“How the Scots Invented the Modern World” is a surprisingly quick read and - for what it is - extremely easy to follow. I thought that after reading all the Civil War, American Political History stuff, it was time to take a crack at the other side of the pond. I’ve watched the multi-episode BBC series on the subject, but this is quite different.  

I received a poignant letter from a blogger buddy turned friend today, offering much wise advice regarding my physical and emotional healing and allowing time to let it happen. His words ring true, indeed. I need to follow them and think only about myself right now. Listen to my body and not try to rush the recovery process.  I don’t have to force myself to be productive so quickly after what I’ve been through. Feel vindicated in my attitude after reading and digesting his letter. Most of all, there is no reason to feel “antsy” about anything. I must learn how to rest. Now, I have help.

Unfortunately, my new V shaped pillow did not arrive in yesterday’s post.  Well, they gave a 4-day delivery window, after all. I just need to find more patience, is all. Will someone please send me a whole lot of patience - - - and hurry!

It’s great to be able to text Linda in Ireland. We had a half hour chat while she rode the train from Belfast back to Dublin yesterday. As it stands now, she is supposed to receive her test results tomorrow (Monday) so we’ll know the good or not so good news.  If she comes back this week, or not. She truly believes it’s really nothing, but it’s the not-knowing that’s driving everyone crazy.

Just a reminder; I cannot navigate the strairs unless someone is physically present in case I lose my center of balance. That’s why I must be a shut-in most of the time.  As I’m learning, not necessarily a bad thing. This also means that I cannot yet drive myself anywhere, either. The center of balance and motion thing again, I guess. I will know more when I talk with the doctor this week. 

Nicole was supposed to pick me up on the way to Dos Locos this afternoon where I hoped to spend an hour or two, but as I got out of the shower I felt a wave of achy pain and some dizziness, and made it to the bed without taking a fall. So I sent a text telling her I’m OK and we’ll do it another time. 

Got hungry a little while ago so I made it to the kitchen for a bit of cheese and crackers and a fruit cup. I’m feeling better…but it’s back to bed now.

And so it goes.

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An Antsy Shut-in Kind of Weekend

This weekend marks 2 weeks out of hospital, and my, how the time does fly!!! And today I am antsy.

No personal post on Friday. Mostly hung out in bed, reading or sleeping. Ate very little, didn’t feel hungry. Just tired without energy, so being a shut-in wasn’t a bad thing. 

This feels very strange. I pretty much slept from 2:30pm Friday until 1:30am today. Woke up feeling fine, without any appetite to speak of, though I ate cereal and had a coffee followed by a bagel with cream cheese and preserves. 

This is the second or third time I’ve experienced this kind of episode since leaving hospital and I think it’s time to ask the doctors about it.  Which I will do on Monday. Meanwhile, this sleeping/napping 12 to 16 hours a day is taking a big chunk out of that “borrowed time” I’m living on right about now. 

Will try to get someone to take me out tomorrow morning - maybe even have breakfast - just to get out and about for a while. Enough to tire me out from actually exerting myself, if you get my drift.I am not going to get any stronger, or prettier just sitting around like Joe Egg and I need to build my strength and stamina.

Found 2 listings for small apartments at Craigslist and put through calls to both of them.  It is the weekend, after all, so I may not hear anything, but then again. 

Some people tell me I ought to relax and watch TV or a movie, but I am not interested in being in a passive mode right now. I can’t sit still for that kind of “entertainment” nowadays. I’ve watched a few YT music videos but that’s the extent of my viewing pleasure.

I’m antsy and need to be engaged in something.  But, what? I think I need an anxiety medication about now.

And so it goes.

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Best Laid Plans & Encouraging Results

Neutrophil. My Friend.

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

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

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

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

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

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

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

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

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

I am amazed.

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