Sunday, September 20, 2015

My Stay in Hospice - Updated

Well, one thing I have figured out is that when you tell people you are going to be spending a little time in a hospice facility, it gets their attention.  Most people associate that with dying.  The end of life association is not always unwarranted in a general sense, just not in my specific case at the present time.  No dying is contemplated for some time.  Some people do wind up spending their final days here but I’m told that is very unusual.  Most of those who come here to the inpatient unit are doing what I’m doing:  the case nurses are working with the doctors to try to come up with the proper doses and timings for the various drugs that we hospice patients need to be comfortable and have our symptoms managed.  Such symptom management is one of the key promises of hospice, which focuses on your personal comfort in a way that traditional medicine does not.

In my case the main symptom is simply pain.  It’s not great but it can interfere with my sleep. 
The main issue is the tumorous mass that’s growing where my left kidney used to be.  When I first went onto the hospice service, I was taking, by prescription, Dilaudid pretty much around the clock to be on top of the pain.  This allowed me to sleep at night, which was very welcome, but it also left me whacked out of my mind during the day.  You’ve heard me mention my poor energy levels for writing and this was part of the issue; I can’t drum up much concentration if my bloodstream is flooded with painkillers.  The second part of that issue is that I was hoping that if I were to be able to reduce the level of painkillers I take during the day, then my taste buds might decide to make a comeback.  Alas, that did not happen and it now looks unlikely to.  But as a result of all this, I was overmedicated at night, arguably, and undermedicated during the day.  And then lately the pain has been getting bad at night despite the medication levels, while I’m also feeling it during the day.  So all in all, the pain treatment strategy needed an overhaul so as to improve my ability to successfully sleep through the night but not sleep through the day.

As a result of that, my hospice nurse, Samantha, arranged for me to come make a quick visit to their in-patient unit, known as The Fountains.  It’s kind of like a bread and breakfast in many ways although with better service.  I absolutely love these people.  They genuinely care and they act like you are the only job they have to do that day.  They hover over you intensely to make sure you’re getting the treatment you need as if you are the only task on their menu. 

The first night was not an improvement; I was not able to sleep through the night without being awakened by pain.  But the next night was much more tolerable.  I did wake up but was scheduled to take medicine at that exact time under my new program anyway, and did so, which allowed me to slip back under and finish out the night.  We’ll see what happens tonight.  If all goes well then I’ll be headed home tomorrow.

Update:  All pretty much did go well last night.  Success is defined as no pain waking me up—specifically at 6 AM, which seems to be the betwitching hour. Instead, the nurse gets to wake me up at that time to give me my pain meds prophylactically—so that I don’t get wakened up by the pain—LOL.  It makes more sense than it might sound like, though.  The idea is that the more you do to get ahead of the pain, the better off you’re going to be.  Once the pain starts and ramps up, it’s harder to knock down.  In other words, find it while one piece of brush is on fire, and knock it down then, before it becomes a wildfire and take several alarms to control.  We’re very close to that point now of getting ahead of things.

The other issue with me right now is shortage of breath. It’s not yet acute on a regular basis but I notice it upon wakening many mornings.  It certainly was acute on Labor Day when I had my initial panic attack. The confidence to be able to breathe is the confidence from which all other physical confidences follow; without the one, you certainly don’t have the others.  I was (carefully!) climbing the stairs to my second floor bedroom when that Labor Day attack happened.  Now the conversation has turned to the possibility of moving me downstairs on a permanent basis so that I can make fewer such climbs.  Essentially what we’d do is convert a media room by placing a hospital bed in it.  This presents other challenges, such as what to do with my clothes, the media center I have upstairs in my bedroom, the upstairs computer room, and so on.  Offhand solutions might include me simply giving up my private entertainment center (there’s nothing wrong with the family room TV).  And perhaps I can make do with a laptop downstairs at least part of the time.

I will say I am the most ambulatory patient in the unit at the moment.  There are 9 beds here in all, located in what they call casitas, and most of the current patients can’t get around by themselves.  The cultural differences are interesting.  There are large areas here dedicated to areas where family members can gather, and some of the patients had up to two dozen relatives hovering about yesterday, which was a Sunday.  There are fewer today and some, both yesterday and today, have none.  I had my wife yesterday and Friday, but now she has to work.  She is on standby though to come drive me home once the all-clear is given.  She did come and stay with me for several hours Friday, Saturday and Sunday.  Saturday night, as I noted jokingly on my Facebook page, we watched COPS.  Afterwards when she went home, I amused myself watching “Living Tiny” on one of those HGTV type channels, which is a hoot because it’s something I wouldn’t have been caught dead watching before.  (If you’ll excuse my choice of language.  Hey, I'm too old and too far down this road to be politically correct now!)   The units do not have DVD players but I brought my own and managed to hook it up, so this afternoon the wife and I watched Bugs Bunny (yes, I am reverting to my childhood) preceded by a sojourn into the low-tech world of two games of Trivial Pursuit.  I have to say I really enjoyed just sitting here and doing that with her.  The two of us must be getting easier to please and to entertain in our old age. Or maybe we have a reason to value each other's company more and perhaps to take it less for granted.

Earlier today a volunteer walked into my room and offered to play the harp for me.  I kid you not.  The harp.  She had her own.  That is the kind of place this is.  As I was working on my Facebook messages at the time, I politely declined, but it was there if I had wanted it.  I figure there’ll be plenty of time for harp playing later; no need now to get a rush on things.  Later in the afternoon a volunteer came by with a therapy dog—its mission in life is simply to get petted.  The wife and I spent a half hour chatting up the volunteer who owns the dog.  She said jokingly that she had spent a lifetime as an attorney, and volunteering to work with the ill in this manner is her atonement for that.  I was actually pretty moved, to be honest.  The dog was too cute for words and the owner was very nice.

 They do feed you here—it’s edible and it’s on time, and occasionally it’s pretty doggone good.  The atmosphere is super comfortable.  I had seconds at breakfast, if that tells you anything.

In fact, it’s no exaggeration to say that they make you feel loved here. And I’ve gotten to talk a lot about myself.  People are fascinated by the course my life has taken over the past two years and seem to hang onto every word about the premonitions that caused me to change my life and take a completely different direction. 
So, if all goes well then today, or by very least tomorrow, I’ll be headed home from an utterly relaxing time and with my meds in better balance, and I’ll be ready to move ahead with publication of that fourth book I keep hinting is coming.  I continue to be astonished at how many people are taking an interest in my story; I spent a good part of today and yesterday answering dozens and dozens of emails and Facebook messages about my stay in the hospice care facility and about the upcoming book, and it was the subject of much conversation in the breakroom today and yesterday.  I’m gonna miss these folks and I’ve only been here three days.

Now another local news publication is taking an interest and may do an interview; a reporter has been in contact with me about that and things are moving forward.  I won’t say anything else other than that so as not to jinx it, but stay tuned!  Meanwhile, one way or another I will have an announcement to make about that fourth book in the very near future.

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