Terrapin Station

Frustrated!

I'm in a blue fit. 
 

Ken turned up with what we thought was a terrible case of thrush on Oct. 29.  The difference between that and the thrush he'd had during treatment was, his tongue was and has been GREEN.  And he's been feeling horrible, like he has the flu. 

We have been to 4 doctors in the ensuing weeks, and he's been through complete courses of 4 anti-fungals of various strengths (all of which give dire warnings about potential liver damage).  We were finally told that they didn't know what to do for us, and he has to see an infectious disease specialist.  There is only one in our town, and he couldn't fit us in for 2 weeks (that's now a week from yesterday!). 

In the meantime I got frustrated and worried about the liver, and last week we went to place called "Any Lab Test Now" and had them do a culture on his tongue.  (For $126.)

Today the results came back, and guess what:  he has MRSA.  Methicillin-resistant Staphylococcus Aureus.  The thing that kills people in the hospital. 

His oncologist, when informed of these results, prescribed a week's worth of oral Levaquin ("call and let me know how that does.")  Meanwhile, a rep from the Visiting Nurse Association told me that the only way to treat MRSA is with IV Vancomycin every 12 hours. 

I am so angry...there seems to be no one who has the full picture of anything, that we can trust.  All of his doctors are like the blind men examining the elephant:  "it's like a rope, it's like a tree, it's like a wall."  Where is our big-picture person, our advocate?  Besides me?  Because I don't have all the skills and knowledge I need to do this properly.  Nor access. 

I'm enraged, thinking how much more well he could have been getting for the past month, with the proper treatment. 

Ken is feeling about ready to give up.  Of course, he's not going to; I won't let him.  But I'd like to beat the stuffing out of a few people.

(ps: not going to NYC at this time, after all.)

Moving

I will be moving offices next week, and I won't be here for it. That's a little weird.

Previous to this, I was in one job and one office for 13 years. My, what a lot of packing when we moved buildings. Then, in late 2009 I moved 2 doors down...again, a lot of sorting, but it was done quickly and over a period of a few days, just toting things down the hall.

Now, after 2 years in this room and this job, I'm moving with my staff to a new building. It's the place where, eventually, our entire division will be moving...but we are the pioneers. We'll start out on the 3rd floor and eventually settle down on the 1st. I'll be out of town on the actual moving day, so I must get all the packing done by Tuesday afternoon (leave early Wednesday).

As more and more of my records are digital, I am realizing how much of the contents of filing cabinets I can actually recycle. I managed to sort through a WHOLE BUNCH of things this morning, packing just the bare minimum to go to the new place.

Some of the things I looked at made me sad; some of them made me laugh loudly. All of them made me realize how little I really refer to all the notes and papers I tend to keep. As a famous keeper, this is a good lesson for me. I've learned from a friend about some of the amazing things that MS One Note can do and am storing more and more there these days.

Now, when it comes to tchochkes...pictures, mugs, sayings...no less of those than I ever had. Some things have to stay the same, after all.

Friday Five: Thanksgiving

Jan, over at RevGals offers this Friday Five:

I've been home from Russia for less than a week, and in less than a week it is Thanksgiving Day in the USA (Nov. 24). So for this Friday Five, answer these questions (and if they don't apply to you, list five things you are grateful for):

1. Where will you be on Thanksgiving Day? With whom? I will be at home with my sweet husband.  Because he is still taking all nourishment through a tube, attending an event where it's all about eating would be unkind to him, to say the least.  Also he's not feeling great a lot of the time, so going somewhere seems like a bad plan.  We are just going to chill.  I hope to get at least a little deep cleaning done (don't want to go overboard) and maybe start decorating for Christmas.  I have vacation on Thursday and Friday.

2. Are there any family traditions or memories associated with Thanksgiving?  Oh my, yes.  We always (in my memory) had all the Butler family over to our house.  I remember many Thanksgiving mornings helping chop celery & onions for dressing, or setting many many card tables with various sets of china and silverware, or raking leaves in the yard to get ready.  There would be 30 or 40 people there. That same group would gather for Christmas at my Gramma Beth's house and later Aunt Emily & Uncle Oliver's home on Lake Jackson.  What a wonderful gift:  a solid feeling of belonging to a solid family full of love.  (Really.  That group really did get along.  No joking.) 

3. What will be on your Thanksgiving menu?  Well, we are eating a lot of dressing (my personal favorite part of Thanksgiving) with giblet gravy (made by Ken).  We each eat it as we are able.  :) 

4. Are you trying anything new this Thanksgiving? Staying home and not entertaining. 

5. What is the weather forecast for this day (next Thursday)? Sunny.  High 62, low 47.  Can't beat that!  Looks like I may be doing some lawn cutting, too.

Bonus: Prayer, poem, song, or whatever you choose to exemplify your image of Thanksgiving (giving thanks).

At Butler gatherings we say grace before meals by standing in a circle, holding hands, and singing this:

 

                                                                

(While I like this inclusive version of the words, using only the word "God" to represent God, know well that the Doxology as the Butlers sing it refers to God as Him.  And we have a Father, Son and Holy GHOST.  No newfangled wording for us, thanks.)  (That's TRADITION for you.)

11

It's 11/11/11, a date you can read forwards and backwards, American-style and European-style.

It's Veteran's Day/Armistice Day, which seems to be celebrated more someplace than others. The kids here are out of school and some communities have ceremonies of remembrance scheduled.

My denomination (UCC) is finishing up a drive called Mission 1, which ran from 11.1.11 to 11.11.11.

It's a popular date for getting married, or so I'm told, just like other memorable dates (for instance 09/08/07).

But mostly, it's a big day for Nigel Tufnel, in celebration of "maximum elevenness." 

For today's Friday Five, share five ways you or someone you know likes to turn it up to 11. How have you gone beyond the usual expected limits? Feel free to interpret this as eccentrically as possible.

As always, let us know in the comments if you play and you'll probably get some visitors to your blog. Be sure to go say hi to others! It makes things easier if you post a link in the comments. There are instructions on how to make that happen here.

***

Gosh, it's over 20 years since I saw Spinal Tap.  I had forgotten about old Nigel.  That's a funny movie, I should rent it again. 

1) I've decided to stop worrying and love the bomb.  No, not really.  I've decided to stop worrying and not worry anymore. Radical non-worrying, turned up to 11.

My employer announced this week that they are "considering" moving all non-contract employees to "at-will status," meaning that we can be dismissed at any time for no cause.  It came as a rude shock.  I've worked in Texas higher education for my entire career, and I have to say that knowing that I could only be terminated "for cause" has been a comforting foil to the relatively low pay etc.  There is a comment period, etc., but I'm sure they are going to do it.  So, I was fretting about it, feeling angry and bitter.  And then it came to me:  I can either let this poison me, or I can believe that God loves me and the Universe wants good things for me.  And I choose the latter. 

2)  Library Use.  I go to the library at least once a week and take away as many books as I can carry. 

I make extremely liberal use of the online catalog and request for hold, online renewals, interlibrary loan, and other programs of my local library.  I am DEVOTED to my library.  It allows me to read broadly in a tremendous variety of areas, and I've developed several small subject-based personal libraries (temporary ones) as the need has arisen.  Most recently they have been on cancer care and cancer recovery nutrition, and also on massage. 

3)  Laughing

Have you heard me laugh?  Then, enough said.  If not, I'll say that it tends to be very loud.  LOUD.

4)  Piles

I wish this were not true of me, but it is.  It just is.  I'm a piler.  At home, at work, wherever I may be.  No matter how often I clean off my desk, the normal state for my things tends to be like this. 

Sigh.  One day maybe I will change.  But for now, piles turned up to 13. 

Here's my desk:

5)  Manic fascination with certain things, EX:  Vaccination against Human Papillomavirus (HPV)

Hello, have you heard that HPV is the leading cause of head & neck cancer in men?  And a major cause of cervical cancer in women?  Did you know kids ages 9-26 can be vaccinated?  Well, then, what are you WAITING for!  Call for an appointment NOW!

From CBS News website (& that's weird)

 

Strange...

So, as I said, Ken turned the corner 2 weeks ago, and today he plumb left the street behind. This, despite feeling pretty crummy for the last 3 days.  Determination - he haz it. 

He headed to Burleson on the motorcycle this morning - there he met 2 friends and they loaded up all 3 bikes on a trailer and went to Galveston.  They will be checking in at the beach house sometime in the next couple of hours, and I'll drive down and meet them there on Thursday.  (There are a lot of other people staying there, too, not just the 4 of us). 

It was the queerest feeling to see him ride away; this is only the second time he has left on his own since about week 2 of treatment.  I sent him with lots of blenderized, frozen food and other equipment.  I hope all will go well while we are apart (like, that he remembers to eat!) 

For a couple that has always spent a lot of time apart, we have been together pretty much 24/7 for the last few months. 

Then, another queer feeling when I went home for lunch and no one was there!  An empty house; something else I used to be accustomed to and am not right now.  It'll be okay.  Tonight I plan to do a massive clean and tidy-up in the front room (where we've essentially been living).  Nice. 

Really looking forward to spending some time

1) together

2) with friends

3) at the beach

4) anywhere but in our house!!!!

Woot!