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.

*

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.

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.

*

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.

*

Queen of Swords

Drew this as the card of the day and while I’ve drawn her many times over the years, her true meaning just slapped me in the head. I’ve just come to recognize my own Queen of Swords.  It’s Linda! She is everything described and no matter where she appears in a reading she is always true to her nature.

Interesting this, because I just learned that Linda must return to Ireland this weekend.  This time for a health check of her own. The mammogram performed on her last visit (she keeps her Irish health insurance since the cost of similar American coverage is prohibitive) has shown a couple of anomalies. She wanted to wait a few weeks until things settled down with the restaurant and with my situation, but her wee mother put her tiny foot down, so her flight leaves Saturday evening. 

She’ll  have the series of tests on Monday with results returned the Monday following, so barring any immediate health issue, she should be back in the States on or about the 20th. of November. 

She’s worried about me getting the healthcare I need. I have labs again next Thursday 13, November,  followed by an office visit with the Oncologist on Friday the 14th. 

I insisted that with the daily progress I’m making, I ought to be able to drive myself both days; they’re a week away after all. 

I think all will be well by then, but convincing a stubborn Irish Lass (yes, she takes after her Mum!) will take some doing.  Still, it is what it is and I’ve had more personal care than I ever thought possible over these past weeks, so whatever…I’ve been blessed.

After all that said and done, the afternoon at DL has been postponed for today. I’ve become weaker throughout the day with the pain increasing in my legs and back, as well.  Some other time will have to do. I don’t want to over-reach or push myself only to end up with a relapse and another hospital stay.

I am not ready for that again.

I am amazed.

*

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.

*

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.

*

Rigers, Oxygen, & Demerol

Bother!  It’s happened again.  Just when I thought I was getting a handle on the relationship between the fevers and the acute pain another new wrinkle is added to the mix.

At 1:30 this morning I was virtually flattened by a fever of 103! It came out of nowhere, sent nurses into quick action, left me sprawled, trembling with Rigers as they attempted to warm me up and make me comfortable. I also received another 6-pak of platelets. Which seemed to help, too.

No false alarm this time round (you know how tired I get just writing the same things over and over again?) only a real slam-bang slice of the nasties to ruin my night’s sleep and make the day miserable. I’m eating a little more, though not much. 

Bev-Ann, one of the best nurses at the center called this morning to say good-bye, seems she’s on her way to 3-weeks in Spain and wanted to tell me she missed me and hoped I was doing well.  Now how nice is that??

The rest of today has been more surprising than ever. As the sun tried to make an appearance through heavy cloud and rains, my energy level seemed to perk up and I was suddenly very hungry. 

After a moderate size breakfast - with 2 cups of coffee, mmd you! - I shaved and trimmed by beard (baby-fearsome is still thicker than I ever imagined. I set about doing a medi-wipes hand shower, followed by a good shampooing.  I’ve not been able to shave my head in almost a month, still can’t, but I was able to scrub it clean and feel refreshed.  More than I have in weeks.

Attacked all the paper work and updated mailings from credit cards, credit union, etc. It’s been sorted out and will go into the file cabinet when Linda returns this weekend. 

By lunch time I was hungry again, but only enough room for a soup, crackers, and some sherbet.  More than enough for me; it felt good not to waste food, too.

After lunch I knew I was done for the day and settled in to read a while.The pain was really bad, but so far, no fevers. A very good sign. Put on oxygen, grabbed an icepack for my upper back, slid under the covers and rested.

For some bizarre reason I feel a kind of calmness that some things are about to fall into place and I’ll be out of here soon.

The LocosGuys called with more cryptic questions and statements regarding my time frame for the move. They keep pointing to an apartment in a specific development, but won’t give me information, so I am not going to take in seriously as I continue to hunt for new digs. 

While I like the guys, this is no time for 20 questions, Truth or Consequences, or Jeopardy.  I need a place to live. No games! I have no time for games, and even less time for bullshit.

Now I await a happy painkiller to see e through.  

Here’s hoping for a peace filled, glorious night. The Seawitch Weekend begins tomorrow.

And so it goes.

*

Counting the Beats and Pain.

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

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

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

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

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

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

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

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

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

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

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

And so it goes. 

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.

*

From the Edge of My Bed...

The past several days have been a painful haze. I don’t even remember publishing yesterday’s post. 

I’ve been flirting with fevers of up to 105 (highest is 104.6 so far)  but for some reason last night, my body threatened to drown me as the fever finally lost it’s battle for supremacy - where I was at 103.5 at one instant then 99.1 a few minutes later. 

Taking deep, full, breaths was suddenly very painful and I didn’t know where I was or what was happening to me.  Turns out I am still in the same room, same hospital, a 3-day fever finally broke, and there was increased activity all around me.

Turns out I have a darling case of Pneumonia and there is a lump of something in my right lung - lower lobe.  Haven’t eaten in 3 days - only ensure, sherbet, and ice cream - so I’m pretty weak.  

The battle of the fevers is caused by the tumor fevers and the pneumonia fevers - and I am stuck in the middle.  No fair!

Temperature remains 99.F and I am scheduled for a Barium Milkshake this morning in an effort to find out where that lump has come from.  This means, of course, that my first hours feeling well enough to eat food is denied me until after the test. So, what’s a few more hours?

Linda is in Ireland today. Before leaving yesterday, she stopped by bringing me fresh clean underwear and a few snacks I hope to enjoy later today. She talked about emptying my apartment, since I won’t ever live there again, told me of possible living spaces she has feelers out for and even though I was still in a fever fog, before leaving for the airport I know she sat next to me on the bed, held my hand, looked me straight in the eye and said, “I Love You Wayne!”

We’ve never used such language in the past, but she said it, meant it, even kissed me on the cheek before heading out the door. Touched, stunned, surprised, disbelieving, and so many more feeling welled up inside of me. I curled up and cried like a newborn babe.  I felt empty and full at the same time Hard to describe in this drug induced state. I’ve never heard those words spoken in quite that way in my life.

Anyway, it’s 4 am, on Thursday morning EDT and I am actually sitting on the side of my bed feeling strong enough to write at least a little of what’s been a nightmare here. 

Doors are closing rapidly, but others are opening very slowly, if at all. I hope for more positive change by the weekend.  Time will tell.

I’l try to get to email and check out comments as I feel well enough.  I never thought just the act of checking email would be so consuming and overwhelming.  But it is, Blanche,  It is!

I’ll trying being more consistent in writing, but make no promises. I’m tired already and 4 hours still remain before the test and the possibility of food after that.

And so it goes.

*

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.

*

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.

*

Update: No Bounce. No Boost.

I am disappointed. I’m not feeling much of a boost to my energy level, even after the platelets and blood earlier this week. Still short of breath upon exertion, and tend to get sleepy at any time of the day.  Then I can’t sleep at night. So, I read. 

Don’t feel like doing much of anything else.  Nothing that would take me from the apartment, that is.

There soon will be no water under the bridge… I’m drinking even more than I am used to and can’t seem to get enough to quench my thirst.

The Nexus is charging for later this afternoon/evening reading.  So, I decided to make a pot of soup. Chicken Noodle it is. Made the stock yesterday and just brought it back to a simmer. Tastes OK, for what it is. Didn’t have noodles so pasta will have to do. Chopped tomatoes and onions, along with the chicken will round it out. 

The best part is it requires little attention. I don’t have the energy to stand around the kitchen stirring a big pot of soup all day. I hope I remembered the recipe and it’s at least as good as the one I enjoyed the other day at the Center. 

Had two meals yesterday - a sandwich and a frozen entree (God I hate those things!) plus an Ensure, so I can’t be weak from lack of food or water.

Don’t know why my body isn’t bouncing back as it usually does (or did) but I’ll find out more tomorrow when I head back to the center for new Labs and a CBC.

When the Center called today to check on me, I explained the situation.  They told me to continue drinking all the water I craved and to arrive for my appointment an hour earlier.  That must mean something is up.

The bruising on my arms and legs is spreading and is now sore to the touch. Swelling has not receded as I thought it would. Don’t know what that’s all about either.  Low Platelets?  Dunno, but will find out in the morning.

Taking it one hour at a time. It is what it is. I’ll deal with whatever comes up as it happens.

And so it goes.

*

I was Floored, Literally

Before anything else I must say that I made the best smothered pork chops Saturday evening.  The Sazerac certainly did its part in making them so.  There were parts of the recipe that I’d forgotten and the cocktail helped my memory enormously. Yes, I could only eat one, but that means there are 2 more delicious meals to look forward to in the week ahead. 

It was a lazy, typical Autumn Sunday here. Foggy, misty, gray skies and little breeze to speak of. After a brief walk on the boardwalk I was short of breath and very damp, indeed. No, I didn’t take a slicker. Came home, took a shower, shaved, and made breakfast. 

For some reason I was anxious all day. Too much time alone, I guess.  I was also tired and went back to bed to read and fell asleep again. I didn’t feel right when I woke up. Not at all refreshed.

Poured at glass of iced water The first clue something was amiss was I couldn’t keep the water down. Nothing came up but the water.  Strange. 

Feeling kind of weak and dizzy, I thought it a good idea to put solid food in my stomach; have a few of those frozen entree things but nothing stirred my appetite.  I closed the freezer with the promise that I’d be back again later hoping my appetite would kick in and something would eventually strike my fancy.

I turned to leave the kitchen and miscalculating distances, crashed my right shoulder into the door frame.  This threw me off balance sending me into a sprawling pratfall onto the living room floor - flat on my face. I hit hard.

While lying there becoming intimately acquainted with my lovely pecan flooring, gathering my jumbled thoughts I assessed the body for any damage. Breathing was difficult, I was stunned and dizzy. When I realized everything moved and there was no pain, I got up slowly and made my way to the bed where I laid myself on top of the covers, still fully clothed.

Breathing heavily and shaky I tried to remember what had happened. It suddenly dawned on my frazzled brain that I had reached the lowest level of platelets and hemoglobin that my body could tolerate. Then I fell asleep.

And this is what I woke up to at 3:30 Monday morning.

Guess Who??

Taken  Monday morning at the Cancer Center. My glasses saved my head from hitting the floor, but I have these exquisite deep purple (my fave color) raccoon eyes, and large, swollen bruises on both legs and arms. (I can't wait until they begin to turn that lovely shade of Chartreuse.) This is what low platelets can do to you.

As long as I lay quietly in bed I was fine, but as soon as I had to exert myself - even go to the bathroom - I couldn’t get enough oxygen to keep me up right. 

My regular appointment for Labs was Tuesday, but I knew I wouldn’t make it that far ahead. I called the Center and they told me to come in right away. Gathered all the energy I could muster and made my way to the car. The outside air was cool and brisk so my shortness of breath was brief.

Plopped into a wheel chair, wheeled into Triage, port accessed, blood drawn, then wheeled into one of the bedrooms in the Infusion center to await results. What a surprise when they came: platelets=12, hemoglobin=5.3…we now know my limit and I know the signs to look for.  But, Oy!  at what a price!!!

Just to be safe, they did at CT scan of my head. I was told a tiny brain, gray matter of some kind, was detected, but no internal bleeding. Again, the glasses saved my head.

I received, replacement fluids, platelets, and 2 units of whole blood and was able to walk unassisted to my car 11 hours later.

Still weak and short of breath I was glad of my appointment with the doctor this morning.  At least it didn’t take 15 minutes to put on and tie shoes as it did a day ago. I’m in much better shape today.  Sore and swollen, but better. 

I'll know more later.

And so it goes.

*

Good Humor, Finding Chemo

 A drizzling rain met me as I made my way to the car for the trip to the Cancer Center for the first of seven Chemo injections this afternoon.  These seven are the fourth and final cycle for this drug and what happens after this is anybody’s guess.

It was raining just enough to make the roadways slippery to the unsuspecting, unaware driver and as I entered the coastal highway from the city a Rover on my left decided she had to be in front of this line of incoming traffic, so she gunned it and as the traffic light at the next intersection changed -idiot that she is - tried to stop. She couldn’t.

Maybe afraid of getting a ticket for running a light, or sheer panic, she slammed on her brakes and the rover did a triple pirouette (fortunately not turning over) and coming to a stop across 2 lanes and facing oncoming traffic.  There was, however, no applause.

I slowed down and stayed in the farthest right lane and got out of there as fast as the 4 cylinders could go. I was not going to wait around for the ending of this unnecessary madness. I will never understand why drivers do the stoopid things they do.

Without delay I arrived at the center and the Labs were done almost immediately. I took the pre-meds and waited for the lab results. Meanwhile the Chemo cocktail was being mixed and I got to relax as the pre-meds took hold.

The CBC wasn’t good, although the white count is good. Everything else is low.  I’m scheduled for one unit of whole blood tomorrow morning.  Why not 2, I asked. The doctor is concerned about the iron level already in my body and wants to maintain levels just where I am over the basic limits and keep me there until the Chemo does its thing…or not.

While awaiting the Chemo injections, a text from friend Sasha arrived with an invitation to cocktails at Happy Hour tomorrow or Wednesday afternoon. I immediately text back, ‘yes, either day.’  He’s been trying to take me out for HH for about a year, maybe more. Schedules, family, kids, sickness have always been in the way.  Maybe that will end this week.

We’ve not been able to have a one-on-one chat in a long time.  He needs it, I can tell.  I need it, too.  He needs to know what’s going on with me - the whole story.  I want to be the one to tell him. 

The Chemo syringes arrive and 2 of my favorite nurses are to administer the goods. The injections are administered simultaneously (and at the same time) on opposite sides of the body.  I always tease and say things like; “It’s like synchronized swimming, you know, think of Esther Williams.”  This always gets them going.  

Then as they count down and do the deed, I comment on whether they were in unison or not. If not, I jokingly admonish the one who was off time. There’s always the “I promise I’ll practice and do better next time” and we all know that next time, will be tomorrow. Yes, it’s a game and we laugh and it keeps us all a little closer to sanity for a few minutes.

There’s always a slight wave of nausea following the injections, so I rode that out, then drove home.

Good news is no immediate uglies to report.  Bad news is the damned rash has already made an appearance. The itching is becoming unbearable. So this is what that one-pound jar of the special cream is for, eh?  Lather everything and do it now.

I’m done. It’s going to be an interesting night. During each cycle something bizarre has ravaged my body and it’s been a different plague each time.  Let’s see what this cycle has in store for this tired old body now. 

Transfusion at 8 am, tomorrow.  Hopefully, Happy Hour with Sasha at 5 pm.  May it be so.

And so it goes.

*

Gotham Must Wait. Or, Not.

A  trip to NYC, including an extensive tour of Memorial Sloan Kettering Cancer Center is currently off the gay agenda. At least for now, anyway. As I wrote last week, there was a tentative plan in the works through the Cancer Center here  for me to be evaluated for any suitable trials or upcoming studies at MSK.

Aside from being a logistical nightmare - get to Amtrak in Wilmington, DE for a train to NYC, subways/walk to the hospital on York Avenue at 67th Street; go through hours of paperwork, tests, and mental evaluation. (I'd probably flunk right there.) Then reverse the whole affair to Penn Station, to Wilmington, then the drive back home (about 2.5 hour drive) - especially since I would be going it alone the events of this week have pretty much killed the idea. At least to my mind.

I suddenly caught a cold, or had an allergic reaction to something (take your pick) a few days ago and spiked a fever.  With this, at no extra charge, came chest congestion and a wicked cough.  In a Neutropenic like myself, this sets off flashing lights and blaring sirens. Spent 4 hours at the center as they drew blood cultures, took urine samples, prescribed a mega-antibiotic, and re-prescribed one med that was put on hold a few days prior. 

Two days later the fever broke, just in time for the HH Party Monday afternoon.  No fever has dared to return since.

Blood work yesterday revealed low CBC again.  Not good news. There was only a slim chance I could have made the Manhattan trip alone under those circumstances. I didn’t like the odds.

I received 1 unit of blood today, am scheduled for Neupogen shots the next 3 days. The 4th and final cycle of Chemo begins on Monday for 7 consecutive days. There is no time for NYC in there, anywhere.  Even if there was the luxury of door-to-door transportation, it wouldn’t work out right now.

So with all this not happening, it’s another round of hurry up and wait.

I have no other medical appointments for the rest of the week and I am loving it no end. Lots of YouTube documentaries in my future, thank you very much.

And so it goes.

*