Wednesday, October 1, 2014

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

Tuesday, September 30, 2014

Monday, September 29, 2014

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.


Just a Thought: Revenge

More later.

Sunday, September 28, 2014

14 Hours Saturday

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

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

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

Heart monitor attached, oxygen administered. Blood cultures were taken again as well an effort to reduce the fever.  No transfusion until the fever was down.
Taken by nurse Michael.
I struggled to will my body to respond to the big dose of tylenol to bring that temperature down. Fever finally abated to 99.2 when the blood was ordered. If the fever hadn’t broken, I was to be admitted to the hospital until it did.  

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

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

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

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

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

Who knows, for how long. 

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

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

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

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

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

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

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

And so it goes.

Saturday, September 27, 2014

Spiteful Caturday



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.

Thursday, September 25, 2014

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.


Throwback Thursday

Weekend at Bear Mountain State Park, New York - 1976. 

Weekend on Bear Mountain in the Fall. Beautiful place. All other pics were of my Ex and have been thrown away. There is only this one of me.

And so it goes.

Tuesday, September 23, 2014

Hemoglobin and Homemade Jewish Penicillin

Taking one look at me the doctor was amazed that I’d broken nothing in the fall. Still swollen and badly bruised in places I can’t imagine would hit the floor in such a fall, unless I happen to bounce once or twice. Now, there’s an image for you.

Hemoglobin still lower than it ought to be, so I received another unit of blood this afternoon. I thought this might be the case, so I prepared in advance. Nexus was fully charged and helped make the 3.5 hours go that much faster. I seem to be on an Historical novel kick at present that are engaging, fairly well written, with special attention to even minor historic bits.

One of the volunteers made home cooked chicken noodle soup, you know, Jewish Penicillin, and brought it in to go with the lunch sandwiches prepared for the patients.  I love the soup, but the packaged stuff is so full of salt and preservatives that I almost never eat it, except in emergencies.  I had a huge mug of the stuff and it was perfect. 

I feel better this evening. Hoping to sleep better tonight, as well. I should feel the positive impact of extra platelets and blood by tomorrow. I have no where to go and no errands to run, so I’ll stick close to home and maybe do some laundry.

And since it’s beginning of Autumn I may just make a big pot of soup myself.  I should have the energy to make that happen.

Right now I am exhausted. Completely wrung out and ready to sleep into the new day feeling like new again.  May it be so.

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.

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