Monday, October 5, 2015

Nurse Day

One of the questions I’m having to struggle with now that I’ve made the decision to continue this blog and to keep you up to date on my medical issues is:  How much “I” constitutes “TMI?”  How little is too little? And should I de-emphasize politics, or toss that subject out altogether?  In answering that question, I’m guided by my late colleague Warren Elly, who also blogged about his medical issues as he was battling cancer.  I wanted to hear more from him.  One day his voice simply wasn’t there.  So, under the premise that too much is not enough for a blog of this nature, I’ll probably wind up writing more than I really should.  Politics we'll take as they come but I probably won't write as much about that.

First of all, I have to issue another round of thanks for those who’ve been reaching out to me. You know who you are.  Some of you are doing it publicly, and some are private.  I’ve been really touched at how many of you have read my most recent manuscript, My Lifetime of Weird Coincidences and Strange Happenings, and have been touched by it.  I hear that I also remain on quite a few prayer circles in various groups and church congregations.  That means so much.  Prayer shawls have come in.  So have gifts of all kinds.  It’s really quite moving.

As you know, the blessing I’m looking for is not necessarily for that of a longer life, but rather just the joy of extracting the most from what I have left.  Those prayer efforts are perfect for that because it tells me that people are thinking of me and wishing me well, which is absolutely all I can ask for.

Down to practicalities:  this was nurse day at the Carr ranch.  Every week Casa de la Luz reaches out and touches me twice, but sometimes more often.  I sometimes get a visit or phone call from our social worker, chaplain, and maybe a volunteer who touches base to  make sure I have enough supplies to get me through the weekend, but every week without fail I get a face-to-face visit from Samantha Farrell, RN, who is my case manager.  She takes my vitals and reviews my pain levels.  The latter have been much improved since I had that in-patient visit to The Fountains three weeks ago.  I’m doing better and am having to take less in the way of medication to get me there. 

I’m on several different types of meds; there’s time-release Oxycontin to deal with the cancer pain in my side; there’s Dilaudid to cope with “breakthrough” pain that gets through despite the Oxycontin.  I take a steroid for appetite enhancement, and it is doing the trick.  I’ve regained all but one pound of what I lost during the chemo, which as I’ve mentioned before is a damned good thing.  Every ounce gained is an ounce of life wrested away from the cancer, since the disease is competing with me for vital resources.  There is an anti-nausea pill that I usually wind up taking as a precaution because I never know what might set me off in that regard.  I have two rounds of laxatives I need to take to make sure the pain meds don’t back me up, which they absolutely would do if left to their own devices, and there is a suppository I have to take if the laxatives fail.  (And I’m happy to report my system is working out just fine without those so far after some initial adjustment).  I have a daily antacid for my gastro-esophageal reflux disease which predates getting sick with cancer.  There’s a broncho-dilator I take as needed to assist with shortness of breath and also Lorazepam to assist with that and general anxiety, of which I have plenty, especially over my shortness of breath.   I have nine (count ‘em, nine) alarms set up on my smart phone to assist me with reminders to take said medication.   Yes, this does wake up me at night but I tend to go right back to sleep after the medicine is administered.  The two times I was hospitalized and the once I was in The Fountains, nurses took care of these reminders.  Some people find such late-night awakenings to be aggravating but I didn’t; I found being cared for in this fashion to quite comforting.

The little powered hospital bed they’ve fit me out with is damned near perfect.  I adjust it every night just right and get sort of a box-and-seat kind of arrangement, leaving me floating on air, which puts me to sleep very fast in conjunction with the meds.  It’s heavenly.  Every now and then pain will wake me up.  As I’ve explained before, normally this takes the form of what I’d almost describe as a firebrand or a red hot poker jabbing me where my kidney used to be.  In such cases I’m allowed either to take my next medication early, or to simply add in a dose as an extra. In either case the dose I’m adding is far less than what was prescribed before we went in to the Fountains to re-adjust my meds, and normally I get back to sleep quickly.  I am left to wonder how bad this will get as time goes on but right now it’s quite tolerable.  I'm doing better and am doing it with fewer pills for now.

I normally get up for the day at about 8:20.  Breakfast consists either of Pop Tarts, Eggos, or a bagel, but I’ve been eating less of the latter since my taste buds revolted and I can no longer really taste the cream cheese.  The taste bud problem has not impacted the other two choices of meal, though.  Lately I’ve been experimenting with eating sugary cereal, which I haven’t done in a long time due to lactose intolerance (but I take Lactaid before the meal and so far it’s working out).  Before you look down your nose at me remember what the doctor said:  Any food is good food for me in this environment, and if my taste buds want sweets, give in!  For lunch, typically a can of soup, Spaghetti-O’s with meatballs, or a sandwich.   Dinner varies; a TV dinner or a quick fast food run is not out of the question, but last night we brought home a roast chicken from Safeway that was fairly tasty although my taste buds were trying not to cooperate.

Today after Samantha left me, confident after taking my vitals that this was as good day as people in my condition tend to get, I went back to the project I was working on, my anti-clutter project.  Essentially, I’m cleaning out drawers.  The rule of thumb is that if I (1) haven’t used it in a  year or (2) don’t expect to use it in six months or (3) don’t know what it is (LOL) then it has to go.  Goodwill is reaping a bonanza.  I went through one round of this last month; now I’m digging more deeply.

Tomorrow I’ll continue a project for Deborah that she desperately needs:  a manual on how to watch TV and Netflix.  Our home systems are complicated.  We long joked, well before I got sick, that if anything ever were to happen to me, Deborah would never be able to watch TV again.  And I do have to ask:  why do cable companies and other vendors make it so complicated?  You practically have to be an electrical engineer to figure some of this stuff out.  So, I’m making her a manual complete with pictures on how to juggle four remotes in order to access everything she’ll need in my absence, including cable on demand, Netflix, how to play the DVD/Blu-ray player, how to play the iPod through the big speakers, and so on.  My joke on her is that while I fully expect her to get remarried after I’m gone, I don’t want her to have to do it simply so she can watch TV.

Which, by the way, ought to tell you something about the level of humor we have in our household toward what is happening.  Both of us are troopers—Deborah probably more so than I am because she has so much more on her.  We face what we have to face head on but we do not let cancer dampen our spirits.  Enjoying each other’s humorous approach to life has always been part of who we are and we are determined not to let that change.

Time now for Judge Matthis!  Deborah TV project to resume tomorrow.

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