Driviel Drone & More,Sat,Oct. 15th, 2011

I seem to be getting some flack from people who do not get  a notification email from Charitableliving as they do show up as a “post” and wonder what they’ve missed and why. Dave also preferred the “Cookie Crumbs” from Twitter, as being more succinct and less wandering around with a lot of Drivel. Some may still be called “Drivel” when they really are more Drivel than content, so back to notification emails for you!!! And more pictures… And more Cookie Crumbs.

Back on Chemo:

When I think about it, it’s a little scary; I was actually off of any kind of treatment for two whole months – and did not die! I was sure I would be dead in two months without treatment. This must be why the Dr. is so dead set against giving any proclamations about length of life.  By now, he knows better.

We spent those two months scrambling, trying to get on to three different clinical trials,  failing in every instance. Most require a three- to – four week wash out time, the normal time between any treatment any but that next 4 weeks as we went through the rig-a-marole for another  trial, could be agonizing as we waited for the final verdict each time. The last treatment of chemo was, by now Aug. 1st, 2011, making it seem a bit too long not to panic if nothing happened anytime soon. -The last time that panicky feeling happened, we started on Gemzar – which is why I then didn’t qualify for that trial, possibly our best overall chance of a real cure… But of course – we didn’t know then. It’s always been a balancing act between what can be done sooner and what can take a while to get ducks in a row for a later option. What might be a better option, truer option.

I have never been a patient person, and Dave has never been one to give up. That makes for makes some rather difficult decision making, even between just two of us.  How far are we going to go before we decide “enough is enough!”. How long and hard am I going to “fight” before I decide to simply “let go and let God”?

  • Until I loose bowel and bladder control and have diarrhea instead of constipation?
  • Sleep 90% of the time
  • Can’t track a conversation
  • Can’t make a decision
  • Can’t go outside the house
  • Look terrible/emaciated and like “death warmed over”
  • Have absolutely no strength at all, have to be carried everywhere
  • Lie/sleep with my mouth open all the time

Will add more more later, – is very hard to hang on to a thought! I think I got two sentences written correctly this morning.

Love,

Cookie

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Posted in Cancer, Drivial Drone, Family, India: General/travel, My free-rein brain, Newest Posts, Press This, Whole-life Stewardship | 2 Comments

Driviel Drone, Wednesday, Oct. 12 th,

  • Slept well
  • Will see the Dr. this morning, see what he thinks.
  • Will decide if side-effectorth the cost effectiveness extreme tiredness) are worth the benefits – which we don’t yet, as haven’t yet done a blood test.
  • Hospice nurse comes this afternoon comes this afternoon.

No chemo today after all – need blood work first to see if liver/kidneys can handle it.

Love, Cookie

 

 

Will report more as the day goes on, from Dr. and from nurse/

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Posted in Whole-life Stewardship | 1 Comment

Driviel Drone, Tuesday, Oct. 11, 2011

  • Got up a bit late – am off to bed a bit late too…
  • Attended my sister-in-law’s-mother’s funeral at 1 p.m. this afternoon
  • Followed that by a milk shake for me and a  sonic cherry lime aide for Dave
  • Followed by a great nap this afternoon.
  • Followed by a great game night with Aisha, Mariam, and Leroy  (I WON) at Qwirkle
  • Have chemo tomorrow – please pray for some slow down here in the cancer.
  • And improvement in the hemorrhoids…need shrinking,
  • BMs ok for the past three days, (like you really wanted to know…).

Peace, Cookie

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Posted in Whole-life Stewardship | Comments Off on Driviel Drone, Tuesday, Oct. 11, 2011

Driviel Drone, Monday, Oct. 10, 20111

  • Slow start to the day
  • Hospice home health as part of the  deal, twice a week, we are ready- I think I’m  getting a bed sore where my tail bone meets the bed.
  • Dave bought a Sitz bath from Walgreens.
  • Hemorroids are horrible!
  • Worked on chosing photos
  • finished the (very good) movie, (Eat, Drink, Man, Woman) .
  • Rod & Marsh Elena & Maariam, and my new Home Health Aide all stopped by today.

Pray:

For the home health aide and the hemmoroids! The hemmoroids plus the beginning bed sores are the worst. Got a new cream for that.  Hope it works.


 


 

 

 

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Posted in Whole-life Stewardship | Comments Off on Driviel Drone, Monday, Oct. 10, 20111

Driviel Drone, Sunday, Oct. 9, 2011

Way to get going!:

  • Birdie’s daughter and son-in-law drove up yesterday to get her and left early this morning. Oh, how I will miss her!
  • Delightful evening with them. Dave made awesome pizza , don’t ask me how I know, I just do…
  • Watched “Chopped”, a show about cooking,  both Bryan and Dave do a lot of cooking.
  • As this may be the only time I meet the guy in this world…I’d say Jane and Bryan will do well for each other.
  • Slept well through the  night with oxygen staying in my nose at least part of it – I didn’t wake Dave up to go to the the Bathroom twice during the night and woke well rested at 7 a.m.
  • Took an ondancetron – just in case – for nausea – and then took all my morning  pills at once!
  • Gave my last minute “wisdom”: choose the life you want to live, don’t live your life on default!”.
  • Dave went off to church to sing on HAT (Hymnal Accompaniment Team) and with our class for special music.
  • Linda stayed with me during early service, Dave came home during SS.
  • I fell soundly asleep  and didn’t wake up until after 12:30 p.m.  Sure am getting good naps in today.
  • Another Ensure and a lime jello for lunch (enough to make the bowels move, which they’ve been doing for the last couple of days on their own), I admit, I  most like the  stuff. by now.
  • Walked about half-a- mile  out of the 2-mile venture.
  • Started watching “Eat, Drink, Man, Woman”, Chinese (Taiwanese) movie about food, love & family, but will stop for Company
  • Gail and Russ stopped by, as did Elena, Loren, Donna, and Aisha.
  • We have had the most glorious rain today  –  on top of yesterday’s full inch, another half!!! We’ve really not had rain since June.
  • Pretty pretty good pain control since then.

Pray:

  • For relief from Hemrrohoids!
  • Hospice cannot provide either a fleece or s Sitz bath Not to get bed sores on pressure points, both things I needed to avoid.
  • My lungs are getting some fluid and I’ve had some minor coughing, that’s why I like to walk and try to breathe deeply.

Love,

Cookie

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Posted in Whole-life Stewardship | 2 Comments

Driviel Drone, Friday, Oct. 7th, 2011

What’s up today –  Friday?

Chemo appointment:

  • Woke up early, stayed up, managed meds and meals generally on time and without issues.
  • Good thing, cause when Dave called the oncologist at 8:55 a.m., he found out the appointment was at 9:30, in half an hour!  We managed to arrive only half hour late, even with a bath and  a (normal) BM!
  • We normally try not to start anything before 11 am – knowing  I often don’t get up and going till about 11 a.m.
  • Met nurses Vickie (kinda tearful on her part), could reassure her of our being at peace about walking this path,  very glad to be on path, with all of the support that I have, I guess I’d better die!   🙂

Shopping for burial clothes:

  • After my chemo, and checked in with brother and sister in law. They had moved  her mother into a nursing home when they simply could  no longer do everything necessary to keep her safe, well, and happy. She  had caught pneumonia and could no longer fight back. She died yesterday and today her daughter was shopping for burial clothes.
  • Today, I took my sis to my favorite thrift store (The Value Center on Douglas) to  look for burial clothes for myself.
  • Weird to think about in the first place, huh! But clothes I really love, I probably would like to give away or pass on as special or keep in a foreign clothes collection  I would have been happy to pass on to my daughter for her to pass on to her daughter…

We found something for EVERYONE, including:

  • a springform baking pan- never been used – & a photo box – for Dave
  • a t-shirt and a kid’s book my sis found
  • some “burial options” for me
  • and a heavy-duty cat scratching post for Marti

Tonight we watched “Guess Who’s Coming to Dinner” – one of my sister’s favorite movies.

Prayer and Praise:

  • Praise for continued pain management
  • Praise for a wonderful time with my sister for two wonderful weeks.
  • Pray for the pain management to continue.
  • Ascites has started developing in my gut, this is the fluid put off by leaky blood vessels and can become quite uncomfortable and needs to be tapped every so often.
  • Please pray for my hemorrhoids to go away.
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Driviel Drone, Oct. 6, 2011

Gettin’ Go’in the mornin’:

  • Got up relatively on-time today.
  • Got through the meds and meals without any troubles.
  • Am up, dressed and alert at the table, with my computer and everybody else on theirs.
  • Twitches are definitely getting stronger and more frequent, making it quite difficult  to type and drink without numerous spills and typos.
  • A sippi cup will be the next step.  Let’s see, Depends for the end and a sippi cup for the beginning… What more do I need?

Keep’in go’in’:

  • Eating my brother’s leftover homemade ice cream…
  • Spilling about half a bottle of my breakfast- and- lunch, (sticky all over me too…Ensure, of course)
  • Jerry came by
  • Got a sippi cup for water, slurpy cup for Ensure and Jerry came by; that’s three good things that have happened today.
  • I greeted him by dropping my glass of ice water – and breaking it  (that’s three bad things)…
  • I have probably have ascites developing in my gut – I had really hoped NOT to have Ascites. Arghhh, makes  my Tibetan Tunic tight!
  • Heading out for Taste of Newton downtown, tonight.

Go’in’ to bed

  • Taste of Newton was good tonight
  • I could eat ice cream.
  • From Steve Job (NPR special):

Pray:

  • Appointment tomorrow morning with oncologist…
  • For decisions and uncertainties

Love, Cookie

 

 

 

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Posted in Cancer, Drivial Drone, Newest Posts | Comments Off on Driviel Drone, Oct. 6, 2011

Driviel Drone, Wed., Oct. 5th, 2011

Getting up and going:

  • Didn’t start out the day too  well,
  • Woke up a bit naseous as well, took an ondansatron to stop it- which it did.
  • When I wake up late, I have to juggle “eating”  and taking pills I was already late takin
  • Made it, but it can take an extra hour in the whole getting up process
  • Being tired makes me much more twitchy.

End of Day:

  • Took a long nap, had trouble getting up.
  • Got nothing done,
  • had a lot of bone pain in hips,thighs and into right knee
  • no walk,
  • spilled a tremendous amout of of ensure on myself, the wheel chair, the table and the chair. Thank goodness,  but how did I manage to miss the laptop so completely?

Love, Cookie

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Posted in Cancer, Drivial Drone, Newest Posts | Comments Off on Driviel Drone, Wed., Oct. 5th, 2011

Driviel Drone, Tues. Oct. 4 th, 2011:

Tumor news:

  • My tumor is NOT HER2 receptive, it was only a 1+ on s scale of zero to 3+
  • so I will NOT be doing the clinical trial.
  • I will be starting weekly Taxotere on Friday at my regular oncologist in Wichita for Palliative Care.

Focus  will be on saying “good-byes” and pain  relief.

  • We will see how bad the  side effects are; hopefully, because the full dose once a month was not dragging me down, I still have enough reserves.  The Dr. did say once that I had exhausted my natural reserves of good health just around the time of the  Tipping Point.

Pray:

  • Taxotere will be  available,
  • Taxotere will be effective,
  • Tumors will shrink,
  • therefore, less pain,
  • possibly longer life span.
  • make the 33 1/3 celebration
  • complete the Sand Creek art exhibit by the 24th of Oct.
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Posted in Cancer, Drivial Drone, Newest Posts, Whole-life Stewardship | 1 Comment

Drivial Drone, Monday, Oct., 3rd, 2011:

Today’s Drivel:

Hymn sing last night at First Mennonite Church was WONDERFUL!

I like river images, so sang these favorites:

  • Like a River Glorious
  • As the Deer For Water Longs
  • In the Rifted Rock I’m Resting
  • My Life Flows On
  • Oh, the Deep, Deep Love of Jesus

Gospel Favorites:

  • I’ll Fly Away
  • Farther Along
  • Guide My Feet (for the years when I was a runner and a good) one!)
  • Home On the Range (which I played on my auto harp on the banks of the Chari river every night  in Chad for three years)
  • Little Boxes Made of Ticky Tacky

Hymns that have stayed with us throughout our marriage

  • Morning is Broken (walked in to at our wedding)
  • Here I am Lord
  • If Thou But Suffer God to Guide Thee
  • Ending with a rousing rendition of Precious Lord, accompanied by Donna Stucky.
  • Many Thanks to:
  •  Marsha and Rod Schmidt for organizing,
  • Anita for including other churches,
  • Roy Goering for taping,
  • accompanists/musicians: Darryl Unruh, Dwight Regier, Michael Combs,  Carol Entz.
  • For all  who came to celebrate: joining the Life Sharing Sunday School class from beyond the doors of First Mennonite, we  are grateful for your presence too.

What a joy it was to sing to each other sitting in the front of the sanctuary!

Will add more  later tonight, heading for the drop-in clinic because my hemorrhoid is giving me too much trouble – probably enough to prevent my BM that is ready-and-waiting!

Please Pray for a simple, uncomplicated outcome!

Generally good news:

  • Bowel sounds are more normal!w
  • Lungs sound more normal
  • Dr. was able to remove some stool,
  • lance the hemorrhoid (I’m a big girl now) and apply topical lidocain for pain.
  • I do feel better in  the lower gut without the other stuft  backed up in there.
  • Generally not-s0-good news:

    • I may have a little  ascities that fluid carrying cancers cells that bloats your guts and needs to be tapped) d
    • Will need to be very careful regarding all things hemorroidoial…
    • Need to sit in warm tubs,
    • dig very gently to remove stools manually if necessary
    • take Miralax daily
    • push very gently
  • Walk
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    Posted in Cancer, Drivial Drone, Newest Posts | 1 Comment