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'.

*

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 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.

*

Feeling the Power

It’s friday and I’ve been in hospital for 10 days. The first 6 reside in a mist of pain, anger and high

fevers. A mighty powerful cocktail. I am amazed I’ve held my own for much of that time. It was probably sheer determination.

An all out effort is being made, or so I’m told, to find a place for me to live that is at ground level so I may still take advantage of the resources and support of the hospital and its programs for in-home care. It needs to be walker and wheelchair accessible. I’ll be perfectly happy with only a room and a bathroom, it’s really all I need, anyway. So far, nothing new on that front.

I want to get a new cell phone carrier because the Sprint Network isn’t very good here - neither 3 or 4G - while all visitors with either Verizon or AT&T can send and received text messages and voice calls from my room, I cannot do so with Sprint.

I tried various ways of getting a new service yesterday, but to no avail. I wanted to have the new phone shipped to the hospital (since they must be signed for) and that wouldn’t do.  They don’t like  different ship to and bill to addresses. Attempts both by phone and online were unsuccessful and I can’t leave the hospital to be at the apartment to sign for a mere cell phone. Work on this front will continue today.

End-of-Life issues were addressed yesterday with positive input by all involved - for once! Kept the Notary busy for the best part of an hour and had a room full of witnesses to get the paperwork done and out of the way. I felt great relief when all that was signed, sealed and delivered.

Sidekick, Debbie, arrived from the hinterlands to visit and doubled her efforts by being a witness on the legal documents. Linda was here, of course. Nicole showed up with more snack-stuff (what do you expect, she’s Italian!) and a fave nurse stopped by for a few minutes before he had to attend a meeting

Spiked one fever yesterday so that was clearly a step forward. Pain was also diminished for most of the day. PT arrived for our daily walk and I do believe I had more energy than she did. 

Just keep swimming, just keep swimming!

The appetite is no stronger and the sense of taste hasn’t improved, but I eat what I can - not much - then there are all those snacks…

Today I will continue to finagle a way to a new cell carrier, and continue preparations for Linda’s trip to Ireland next week. I hope to have everything - all the little bits and pieces that the legal eagles demand that can drive one to distraction - in place before her flight leaves next Wednesday.  By that time I hope to have news regarding new digs, a place to call home.

Thanks to everyone for their thoughts, prayers, and good wishes. Each and every one makes me feel just that much more human. You have no idea how much it means to me.

And so it goes.

A Note From Hell

Two CT Scans again yesterday, this time to find out if anything grows within my head or chest. (Think of Fungus.) Find out the results today.

Patient Care Services will be sending someone to chat today - if I can keep the fevers down - to plan for my needs if I am released. No, they’re not sure that’s going to happen until they see the numbers. And what degree of “mobile” I’ll have moving on.

Only spiked a single fever last night and I feel stronger today. Although walking is difficult, I tire easily, and the calves hurt almost immediately, if I build walking strength does’t mean I will be free of a wheel chair.  Grim future, that is.

The Locos Guys were in for a long visit yesterday, as was a friend from the previous life. The visit with the locos guys was fun and serious at the same time. They are still holding my job for me and really wish I was back. Seems they’ve had a homophobia issue with new summer staff this year.  And no one to turn it around.

It was great to visit and catch up on the daily goings on at the restaurant and good to know they would have me back, if I could ever return.  That’s a few positive things to draw strength from right there. Today I received a massive flower arrangement from the guys and the staff.  Nice touch. Made me cry.  Jeez, what a sap!

Yesterday was a carousel of medicine changes. Two of which I had never heard about before. They’ve also changed the doses and times of the pain meds, so I don’t have to writhe in pain for the in-between  extra hours.  Spreading it out in smaller dosages for shorter periods of time proved workable for me yesterday and last night.

Woke up once and received the pain drugs quickly and returned to sleep right away before the pain could get a firm hold and shake the shit out of me. See, I’m even getting a handle on Med-speak. (grin)

I’m learning more about the pecking order in hospitals than I ever needed to know. It’s a dirty business and it seems that by my recent actions, I’ve upset the balance and a few are unhappy. It will be a stand alone story when I feel well enough to write it, not today.

Let’s just say that I dismissed the duty doctor and leave it there for now.

Working with Patient Services this afternoon ti sort out Power of Attorney & End of Life Directives.  And whatever else they may think important. I know have the right person to handle that stuff now.  I’m in good hands.

Stuck here for a few ore days, at least. Cannot be I be released as long as I cannot take care of myself in my own place. Tomorrow is another day, believe it or not.

It is what it is.

And so it goes.

*

Just a Thought: Pain

Maybe.

I'm Here. Just Don't Aske Me Where "Here" is.

Still in hospital, same room since admitted on Oct. 1.

Nightmares do not only happen at night.  When the pain strikes it's a real screamer. When the fevers take hold (usually 2 or 3 times daily) I cannot move at all. Can't hold up my own weight. I am in a magic bed that has a massage mechanism to prevent bed sores.. thrilling, that.  Since I am prone to fall due to weakness,  the bed can also be a tattletail. An alarm will sound if I try to get out of bed without assistance. I feel pretty safe when I feel anything at all.

Fevers spiking to 103.5 have left me totally drained. I cannot go home while they're happening.

Probably unable to go home at all to a second-story apartment. I will need at least a walker, possibly a wheelchair.

There are rumors of an assisted living option, but the specialists don't believe that will be enough.

One visitor only since arrival.  That's all I can stand.  Good friend.

Due to the arrogance and stupidity of a new physician, I almost bought the farm the other night. For the next 2 days I wish I had.

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

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.

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.

*

And Then There Are Days Like This...

I always like to plan my day, especially if it is packed with events, meetings,

appointments, etc.  Learned my lesson years ago about scheduling too close together - not leaving enough breathing time for possible delays, so with any luck, I am always either early or on time for whatever is next on the gay agenda.

Then there are those days that da Debbil seems to laugh out loud and say, “oh, you think this will run smoothly, do you?” (followed by his evil laugh) and of course,  1 or more incidents, obstacles get thrown in my path and I get mortified and muddled.

Today was one of those days. Of course the medical establishment was heavily involved - and to blame - but (as usual) it could only be sorted out by ‘self’ with much running around from office to office, lab to lab.  My entire medical history is available to 4 thrilling CDs that I had to pick up, deliver, and sign for at various places at certain times of the day.  That’s what made me late. 

By the time it was all signed, sealed and delivered I was10 minutes late for the final chemo treatment and infusion of a single unit of blood ordered for this afternoon. Hurry up and Wait! I don’t like being late. Period. It’s annoying and rude to be so and I avoid it if at all possible. 

Of course, when I finally arrived at the Center, they discovered my vitals were all over the charts, nothing was normal. It took a good half hour for calm to be restored to my mind and body, and since I was spiking a moderate fever, that helped to slow me down. Tylenol was given to bring down the fever - they will not infuse if fever is beyond 100.5’, and I was at 100.8’  The blood was late in arriving, so that worked out well. 

The Center staff was having a similar day. Irate patients and emergencies made the place almost hostile. Eventually, they got my drip going before more Hell broke loose. Blood arrived, but so many staff were otherwise engaged in some emergency that it took another half hour to get back to me. Once they shot me with Benadryl, I was left to my own devices - in my own little relaxed world. 

Then the battery in the Nexus died, so there was no reading opportunity to take me through the next 2.5 hours. I could have sworn I charged it yesterday, but I guess not. Brain fog, again. 

The Chemo was given first.  It was noted that during this final cycle the drug has been burning my flesh from the inside out leaving a spot about 4” round with dry peeling skin and stinging like Hell. This had not happened previously. Thank the Goddess these are the last injections of the fourth and final cycle of this nasty treatment regime.

I don’t know if this treatment will ultimately prove worthwhile, or what comes next if it doesn’t, but I am just happy that it’s over.

I just got in at 6 pm., too tired to cook a proper meal, so it will be a frozen entree tonight. After supper I plan to finish the London Blitz Diary of 1941 (which is on the iPad, not the Nexus, or I could have finished it today) which has been alternately a scary and tedious ride.  I don’t know how these people remained sane for so long. But, that was the British throughout the war.

Anyway. Made it through the day.  It’s over. Home safe and sound. Barring some violent drug reaction overnight, tomorrow is a free day. If the weather is anything like today - high of 74’ F - I will be out and about early with no plans at all, so who knows what I might get myself into…

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.

*

A Weekend Lost to the Stars.

Almost literally. An allergic reaction to the transfusion on Friday sent me to the hospital on Saturday morning. I was kept overnight and as the symptoms receded on Sunday, they sent me home. 

Having been pumped full of Benadryl for 2 days all I wanted to do was sleep, anyway. Dehydration was also a problem, so they kept a saline solution IV going to replenish those “precious bodily fluids” while I slept.  I mean, I was really out of it. 

I was informed that the more frequent the transfusions the more likely (statistically) I will have some reaction or other to various nasties floating around in the new blood. My compromised immune system isn’t very helpful in this case. So, it’s all a matter of time, really.  Something more to look forward to, I suppose.

Slept all of saturday and most of sunday, before they sent me home.  It’s all kind of hazy now, but I got home and threw myself on top of the bed covers and went to sleep again.  Woke at around midnight, groggy and thirsty, so I had a Jello and a tall glass of water, took off my street clothes and climbed under the covers.  Slept fitfully for another 3 hours, so I guess I wasn’t quite over the Benadryl after all.

Feeling much better this morning, though still no  appetite to speak of. There are a couple of fruit & jello cups and a yogurt, or two left in the refrigerator, so I’ve got to get to the store as soon as I feel strong enough to move about on my own.  I’m not as shaky as I was and my head feels clearer, too. The welts  and skin discoloration are all but gone today, though I still itch a bit.

I may have a little soup to give me a boost so that maybe I can make the drive to the store for supplies. I don’t need much, at least nothing to prepare a full meal.  I’m not up to that at the moment. Just a few snack things to ingest when I really need something in my stomach. I’m afraid to find out how much more weight I’ve lost over these past 3 days.

I need to check the mailbox. After all the rainstorms we’ve had, I don’t know what condition any of the mail will be in, but at this point - since it’s likely to be mostly medical statements - I don’t care much.  There will be more of the same in a few days, no fear of that. 

If I can keep this act together I hope to have a chat with the sister to see how she is doing.  It’s been a week and she has been in her home since the middle of last week, I assume. If I’m not up to it I won’t call, the last thing she needs is more to worry about while she’s trying to heal herself. 

I hope she’s having better luck at it than I am.

More later. Maybe...

*

Who Knows Where Time Goes

I’m not quite sure if I made it through the weekend on my own or if I’ve been extruded through a very narrow hose. My mind has raced every idle waking moment causing great distress showing memories from the past; images from childhood. Sleeping wasn't much more comforting.

My dreams have been most bizarre.  Usually vivid, they are now unfocussed, out of time, and though people are desperately trying to tell me something, I cannot hear them or make out what they’re trying to say.  Frustrating to the point that I wake to chills and distressed groans. Like I’m missing something important. This has been going on for a while now, so it's not the painkillers talking. If you get my drift.

I spiked a fever at one point, a fever high enough to cause my lips to turn brown and chap up like they were sunburned. They peeled most of saturday and by last night all was back to normal. Very bizarre.

At this point, what does it matter.  It’s Monday and I still have breath, am mobile to some degree, and though I slept most of the weekend away,  taking  care of the most important items on my gay agenda: caring for the wound (which is healing more slowly than I’d like) and taking the meds on time. This place is a veritable time tunnel with 3 timers going at all hours. May sound ridiculous, but I forget easily anymore and the reminders help a lot. Other than that, it was reading or sleeping.  Not caring about anything or anyone else in the world. 

That said, the sister is due to be sprung from the hospital sometime this week. Don’t remember much of the conversation with my niece, but I gather they’re waiting for certain medical obstacles to fall out of the way before they will release her to terrorize the rest of the city. 

I only spoke with the niece, since my quasi-coherent state may have upset the sister. Yes.  I admit it.  Painkillers!  Pure unadulterated painkillers - and I needed them badly. 

No real food, though that would have been nice. Having ingested enough soup and green tea to float Fire Island, I tried my hand at cooking a real meal yesterday afternoon. I had some fresh Choriso which I sliced into small chunks and smothered with baby fingerling potatoes and sweet onions with a little olive oil, Rosemary, and basil. 

Smelled great while cooking but by the time it was done, so was I. There was just no energy left and certainly no appetite for a real meal. I let it cool and put it in the refrigerator for the night.  Probably taste better after sitting in the juices, anyway.  I’ll try eating it again today and see what happens.

Instead, I had a yogurt, slice of melon, and Ensure before slipping back under the covers until the timer went off at 4 am for the first med of the day. 

Today is another day.  Why, thank you Scarlet! 

I will do my best to be up, present, and about as much as possible this Monday. Lack of proper exercise, even just a short walk, isn’t good for the heart - not to mention the rest of the body and mind. 

And so it goes.

*

Power P.A.C. Surgery…And Beyond!

Jeffrey was right on time Tuesday morning, as usual,  (like me, he hates to be late for anything) and we were at the hospital in minutes - earlier than expected, actually.  But since the directions to the correct entrance were incomplete, I had to make a phone call to sort out that minor mess. 

Same Day Surgery waiting area was already a bee hive of activity as I arrived to check in. Although I was the first surgery of the day for my surgeon, there were patients being escorted back to pre-op before I arrived. Clearly other surgeons began their day even earlier.

And so many support staff.  There were 3 nurses, 3 technicians, 2 anesthesiologists, and the doctor’s assistant - whom I met at the office the week prior.  That gaggle was only for my surgery.  Every cubicle had as many or more hovering around as patients arrived.

A slight hiccup occurred when I told them I was alone and there was no one to receive instructions about my home care and caring for the wound. There is only me.  “But what about Jeffrey?”, they asked.  He’s my transportation only. 

It was becoming a heated debate about what to do about this “problem” and how to proceed. I was getting angry. I was being primed for the anesthesia and had quite enough at some point.  So I sat up and said, “Look, I Am. Alone.  Three simple little words.  If this was going to cause another cold war, just cut me loose of all these tubes, I’ll go on my way and we’re forget this ever happened. I can’t believe that little reality is so difficult to wrap your heads around. I am alone!  It is what it is! Is that clear?  Now, what’s it going to be?

Silence. Subject dropped, as more scribbling and many individual initials went into my file - which seemed to get thicker by the minute. 

There was some concern about my CBC being so low but after a lot of low murmurings among the staff, they decided it was in a safe (enough) zone to proceed.  Shortly after that conversation I began to fade as the la-la-juice took over and I was being wheeled into the OR. Huge room for a tiny surgery like mine. 

The surgery went smoothly. Don’t be shocked by the image above. The actual site is about the size of a half-dollar piece.  Back in recovery I was given ginger ale and saltines as they brought me back to life and Jeffrey was called to fetch me. It was barely 9 am as we hit the road for Rehoboth. 

We stopped at the pharmacy to pick up a pain prescription and then I asked if he’d like to break bread with me before taking me home.  I hadn’t eaten since Monday afternoon and he’d had nothing at all in the morning either. He accepted, thank goodness.

After the hearty meal I was overly stuffed (haven’t eaten that much in ages) he took me home and I took all my meds, grabbed a pitcher of ice water and headed to bed.  As the local began to wear off the pain grew quickly. I knocked back a painkiller, slid under the clean sheets and rested on my back until I fell asleep.

The rest of Tuesday and all of Wednesday are a complete blur. I remember nothing.  I set out all pills on napkins with their various times, so I wouldn’t forget.  Set the timers to wake me as a reminder to take them.  Hey!  It was the best way I thought of doing it. I don’t believe the phone rang once and for that I was grateful. I needed the rest and that I certainly did. 

Ran a fever of about 100.1 at one point but don’t ask me when. It’s all a blur.  Got out of bed for the bathroom and pill-taking, and that is all. 

Back among the living today. Feeling stronger and in less pain. Wound appears to be healing well. I have labs to be done this morning, so I’ll have them check and change the bandage if necessary. It is hard to do these things through a mirror, after all.  I know.  I’ve done it and what a laugh that caused. 

There is a text message from Sassy Bear on the phone since Tuesday morning. I’ve not been conscious enough to respond.  Probably unnecessary at this point. I’ve not read any of my fave blogs all week, either. 

No word on the sister.  She’s in a good hospital and has her 2 daughters nearby. I’ve had my own problems with no one nearby.  This experience reminded me that I must get a new Advanced Healthcare Directive in order, since my previous friend is no longer interested. Trouble is, there is NO one else, so what does one do in that case?  Gotta find out, that’s for sure.

One more note.  After having nothing in my stomach since Tuesday’s delicious breakfast, I was starving, so for supper last night I had a bowl of Ramen noodles.  Yes, the stuff we all lived on in college. I always keep a few packs around in the hurricane supplies shelf, so for about 10 minutes I felt like I was back at NYU.  Stuff smells the same and (unfortunately) tastes the same. Still, it was hot, wet and filling.  Most importantly, I wanted it, which made it go down easier.

And so it goes.

*

The Brink? Or Scenic Overlook?

It was foggy with a light drizzle. The drive to the Cancer Center was a challenge, but I made it; grateful the tea with ginger stayed down. It was a battle of will all the way, though. Physically, I was sliding downhill so fast that when I found a place to park, I had no energy for the walk to the doors.

How long before I cannot make the drive myself?

Spotted by one of the Lab nurses (I must have looked a frightful mess) she tapped on the window and offered to get a wheelchair, or help me inside herself. Not wanting to make a scene (or risk being swept off to hospital) I asked for her assistance. 

Once inside there was no waiting. I was wheeled (like it or not) back to Infusion and with 3 nurses hovering, prepped for the transfusion as vitals were taken. Most of what happened is a blur now but somewhere along the line a mild panic ensued when they discovered my fever.  I thought it had subsided, but I was wrong - it was now at 100.2 and usually a red light, for some reason. 

Blood pressure was very low (even before the Benadryl injection), the room was spinning, my stomach bouncing like a beach ball, my head was pounding and I couldn’t breathe. 

Other than that, everything was fine.  

Arranged comfortably in an infusion chair, covered with warm blankets and legs elevated,  I was given 2 Tylenol and a Compazine (sp?) and ordered to remain still and quiet as more blood was drawn to check for possible new infections. 

I’d lost an additional half-pound of body weight since the day before - on top of 2 pounds lost in the last week. What can I say? 

I nodded off, or passed out. I was disoriented when I came to, realized there was supposed to be a doctor appt before the transfusions and asked what happened. Seems the oncologist thought it best to start the blood products to settle me down first. He came in later, sat in an adjacent chair and went over treatment in the immediate future.  Anyway, this happened later, much later.

Took a while to find a good vein, but finally an IV drip was begun. When the nurse saw the multiple poke marks where porting was unsuccessful, she asked why I didn’t want a PICC port? Because I didn’t know if I was a candidate, or if I qualified, and no one ever suggested it, that’s why. She made a quick note for the doctor in my computer chart, patted my arm and began to pump the Benadryl as the new blood began to flow slowly. 

Vitals were checked again after 15 minutes - fever was down to 99.9, but blood pressure remained too low for their taste.  It was decided that another unit of blood was needed and I wouldn’t be going anywhere for the duration. Like I had somewhere to go?

Doctor arrived waving lab results and offering new suggestions for the next course of action.  Yes, it all happened like that and that fast. First, he studied the latest blood results and my answers to the usual “how you doing” questions. Wrote a prescription for an antibiotic to address the boils and acne, another one for compazine for the nausea, one more for the increased back pain (from lying in bed too long) and then got down to the next phase of my treatment.

He started the ball rolling for a new oral chemo drug called Revlimid.  Which turns out to be not that new, after all.  Revlimid is primarily used to treat anemia caused by Myelofibrosis and other myelodysplastic blood diseases. I say started the ball rolling because it seems this stuff requires a long drawn out procedure to get started. 

I am running out of patience with this long-drawn-out waiting shit and told him so.

Initially, the request is made for the drug from a special, authorized pharmacy (drug not available from your regular corner drug store) which can take up to 2 weeks for approval. The patient is contacted for who-the-fuck-knows what reasons, then the drug is delivered directly to the patient’s home. No, really.  I’m not making this up.

When the patient receives the drug a call must be made to the Cancer Center prior to the first dose.  The patient must report receipt of the drug to a specific person in the oncologist’s office. Don’t ask, there is no reason for, nor explanation given for this extra step.  

Keep in mind, this all hinges on the patient being accepted for the drug and by that I assume the patient’s ability to PAY. The insurance, if any, and the level of coverage the patient enjoys are, I am sure, major factors. 

As usual, the side effects read like a bad horror movie, and as usual, are downplayed as being “rare and isolated.”  Yeah, sure.. Uh-huh.

It was mid-afternoon by the time the second unit began flowing that the fever was down, the nausea was almost gone and while the BP remained low, it wasn’t in the danger zone. Oh, and I was one hungry puppy.  All good signs. 

Carefully, I picked at half of a chicken salad sandwich followed by a fruit cup and was pleased when all settled well. Must admit, that tiny bit of food filled me up quite well. Curious, that. 

The doctor’s nurse appeared with news that a PICC port had been approved, and gave instructions for the initial appointment with the surgeon assigned to the procedure.  This will be a permanent addition to my chest and eliminate the vein search problem once and for all.  Many patients sport them and seem to experience no discomfort.  I’m all for that.  No more blown veins!  Yay!

So in about 2 weeks time I will be implanted and there will be yet another new twist in my healthcare and my body. 

The sun was setting as I was released from all tubing and I was eyed carefully by the nurses as I made my way (on foot) out to the car. The prescriptions were waiting for pickup at the pharmacy, so I pushed myself to make that one stop before heading home. Though I staggered like a drunkard, I was successful and home within a half hour.

Changed clothes, made a tea, and began reading through the pile of new documents received (and signed for) throughout the day. Nice to be more coherent than when I left home this morning. What a difference new blood and a new medication can make in such a short time.

Back from the brink, again? How many more of these trips can one person endure? I wonder. The decline seems to occur more rapidly each time, but for some reason they don’t scare me as they used to.

Thanks to the pleasure of re-reading the “Pern” trilogy by Anne McCaffrey, I’ve been able to put most of the pain out of my mind this past week.  Even after 30+ years, the stories, human characters, dragons, events, and world of her books are still alive and well.  It’s been a great joy to rediscover that world and immerse myself in her characters and their lives.

I dare say at least one of them would make a great Pixar film.

Anyway, that’s enough. The long and short of it. I’m not well and so it’s off to bed - just me, my trusty painkillers, and my book.

And so it goes.

*

The Ugly Has Returned.

Not doing well - again - and have spent  the last 2 days in bed either asleep, reading, or fighting off nausea. The body has rebelled against one of the new meds by presenting plagues of acne, and nasty, painful boils. No appetite to speak of; no food sounds enticing or even interesting. No energy for its preparation, either. I eat what I can, when I can, and pray it stays down. 

It amazes me how quickly things can change - I mean, in a matter of a few hours - and life is miserable all over again. To top it off,  I knew there was trouble when I spiked a fever of 100.1 this morning. Slammed right into that big wall of WTF!  Really.

This turn of events is a far cry from only a few days ago. I felt like taking on the world. Now I can barely put on my own socks and shoes without resting between each process. It’s like there’s not enough oxygen in the room.

There's a doctor's appointment this morning before transfusion where I will learn the next course of action he has planned. I think it may be a chemo.  We’ll see.

Reading has taken my mind off what I’m dealing with, for the most part. Since I spend most time in bed, I’ve not read, or kept up with my favorite bloggers.  I hope that will change after today’s transfusion. 

Though I am scheduled for one unit, something tells me that 2 are in my future once they do a new blood workup. We’ll see.  I also want the nausea issue to be addressed, because that’s really the worst lately. Tea with ginger and lemon help, but not for long and only if I lie down immediately.

I find dry heaves painful and exceedingly unattractive. 

We’ll be back after these messages…

And o it goes.

*

Mama Said There'd Be Days Like This…

Actually, no.  No, she didn't say that.  She didn't even hint at anything close. She couldn't possibly have foreseen the kind of FUBAR these 2 days would turn out to be. 

Without consulting me, my appointments were rescheduled. No one bothered to inform me.

Blood drawn on Thursday, but, aside from that, other appointments were being put off til Friday.  However, when the CBC result numbers were in the basement, they quickly rearranged things and got the doctor to see me.  Meanwhile I was so weak and short of breath, they forced me into a wheel chair to be pushed from lab to lab. Embarrassing! 

I gave the doctor's nurse a copy of the list (see my previous post) of the side-effects I'm not coping with very well. The prednisone is doing weird stuff physically and emotionally, to my vision, memory, speech patterns, and temperament. I seem to have developed a short fuse and am quick to anger over really stupid things. 

I tear up, or go directly into a all-out crying jag at the slightest emotional twinge.  Anything, absolutely anything  can trigger this and I don't know why, or have control over it.

The doctor listened and was sympathetic. He's taking me off the Prednisone - reducing dosage to 30 mg. over the next 5 days, then 20 mg for another 5, etc. Then I will begin Danazol, supposedly a more friendly (?) steroid for a few weeks to see how my body (and mind) respond - before beginning the Vidaza Chemo.  

Seems the only positive results of the Prednisone was the increased Neutrophil count, bringing them up to normal levels. I am still not sure it was worth all this pain and anguish. Wearing the medical mask was annoying, but not debilitating. I mean, if I had my druthers...

The doctor had a front row seat to a very unpleasant scene when I got an attack of Prednisone-induced tremors during our interview. Don't think he'd ever seen an episode like that up close and personal. He actually looked scared. Anyway…

In the best of all possible worlds, the Vidaza would have been started this week, but now is put off for another 6 weeks to determine my response to the Danazol.

He ordered the new prescriptions as I was wheeled into the Infusion Center to begin receiving the 2 units (another 8-hour day) of new blood. I made up a sign, thanks to the desk nurse, that said: 

"BEWARE! 

PREDNISONE AT WORK.

THIS PATIENT IS NOT RESPONSIBLE FOR 

PHYSICAL OR EMOTIONAL OUTBURSTS.  

YOU HAVE BEEN WARNED." 

I held it against my chest as I was wheeled into the room as patients and the staff screamed with laughter.  I needed that.  I think they did, too. They say 'trouble hates nothing more than a smile'.

A good vein was found quickly this time (in my left arm) the port opened, the saline drip started, then first unit of blood (vital signs were low) -  pumped me full of Benadryl as quickly as possible. 

Without the use of my left arm I couldn't hold or read from the Nexus.  That may have been the plan all along. These folks are diabolically gifted.  Instead, I plugged the headphones into the iPhone and listened to music. Enya sang into my head.

As the new blood began to flow, the Benadryl kicked in, and I drifted off into an uneasy sleep (short of breath, shaky) for over an hour. I woke up feeling rested, relaxed, and better able to breathe. When lunch arrived I was starving - and thirsty. 

The second unit arrived, was ported, though vital signs remained low.  No Lasix necessary this time round. Great! I could go back to sleep without being disturbed by a full bladder.  My nurse woke me holding a couple of pills.  Seems I had spiked a fever over 101' and it had to come down.  Took the pills with 2 big glasses of water, then went back to sleep under heated blankets provided by a volunteer. The combination of good care, new blood, and restful sleep was clearly what I needed.  

I was able to leave the building under my own power and take new prescriptions to the pharmacy. Two were called in, but narcotics must be presented in person. The pharmacist let me wait while all were filled (so no need to drive back over the holiday weekend) then I drove home free of the usual dizziness or anxiety - what a great feeling.

Slept through the night for the first time in a while. Feel more like myself today. That the dreaded Prednisone is reduced by 10mg today is good news and a step in the right direction.  First of five days at 30 mg of Prednisone. Maybe I'll be more like my old self again soon. 

Latch on to anything positive that comes your way.  Yeah, that's really what my mama said.

And so it goes.

*