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 | Leave a comment

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

    Driviel Drone, Sunday 2nd, 2011:

    Today Drivel:

    • Best things about today was tonight’s wondrous hymn sing at church- will say more tomorrow!
    • Reasonable day.
    • No walk, good nap, good SS (taught by Dave) using an epistemic framework for Revelations 4.
    • Long nap.
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    Posted in Whole-life Stewardship | Leave a comment

    Driviel Drone Sat, Oct. 1, 2011

    Today’s Drivel:

    • I’ve gone two months without any treatment, I did not expect to live this long without any treatment.  I expected to be dead or more explicitly dying by now.
    • Instead, I’ve had another good day!!! It’s amazing, so many good days in a row, must be all of your prayers!
    • Actually went out with Birdie on the bike path for about 1 3/4 miles, of which I walked a good half mile.
    • Need to drink two liters of water on top of four Ensure every day or I won’t pee properly.
    • Have hemorrhoid that doesn’t bother me much.
    • Haven’t felt as bloated, actually ate ice cream with John & Colleen this evening, Birdie, and cousin Naomi, who drove up from KC this afternoon.
    • Joel and Hilda picked up their photos this afternoon and we had a wonderful, relaxed visit with them, I can say it was relaxed, I fell asleep for awhile.
    • I haven’t had any nausea over a week.

    Pray:

    • Please continue to pray for these good days – it’s working day day by day
    • I have a hemorrhoid  that doesn’t hurt or itch, but it does mean I can’t really push that BM that’s just right there out either… Trying to go “all natural” with that!
    • Pray for that day-by-day “peace-that-passeth-understanding”.
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    Posted in Cancer, Drivial Drone, Newest Posts | Leave a comment

    Drivial Drone, Friday, Sept 30, 2011

    Today’s highlights (and low lights, I guess…)

    • Slept in a very long time – went back to sleep after  7 a.m. meds and drinking an Ensure.
    • Still bloated but felt better.
    • Took a shower.
    • Felt felt so good went out walking on the bike path – I walked an entire mile  pushing the wheel chair (my “walker”) without sitting down!!!
    • Scared off every turtle without getting a single photo…
    • Am only drinking Ensure.
    • Found out there is no “wash-out” time between starting taxotere next Friday and starting a trial if my tumor is Her2 sensitive. This is very good news. Most trials require a 28-day wash-out period when you can’t do anything – very scary, when you already no what you were taking isn’t doing any good.
    • Tomorrow I will have gone two months without any treatment at all.  Frankly, I didn’t expect to live this long with no treatment! However, the cancer has concentrated on metastisized extensively to the bones, and spread in the abdomen, threatening a bowel obstruction – still my greatest fear and threat.
    • After a really great day overall with cousin Trina dropping by, I suddenly developed intense bone pain between four and five p.m. I took  a breakthrough med and used ice, then fell asleep and slept all evening while Dave went to the Sunday School social where his team won at “A Minute to Win it”. No doubt there was something that having a tall guy with long arms (“the elephant”) was an advantage for!
    • Am going to try to convince him to watch “Doctor Who” even though it’s gotten late…

    Pray:

    • For those bowel obstructions just trying to happen – all those little nodules (or not so, by now) pushing in on my small intestine, creating little check-dams all along the way. Dr. Delmore said a month ago my bowels could look like a string of sausages… each tight point threatening to become a full-blown obstruction. Pray that they would slow down!!!
    • That my tumor will be her2 receptive – this gives a very good option for treatment that could do some good. Not a cure, but palliative for pain and slowing things down a bit.
    • Also that the taxotere would not have any major side effects.

    Love Cookie

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    Posted in Cancer, Drivial Drone, Newest Posts | 1 Comment

    How can I be so (un) lucky?

    Remember when I used to go around saying, “We are so lucky… over and over?

    Well, I don’t say that anymore!

    Now, I wonder, how we can be so UNLUCKY?

    A year ago, walking the rail on the 10th street bridge, able to balance all the way!

    Even though there is so much we don’t understand – especially about our oh-so-bad, “perfect-timing” that (un-beknowns’t-to -us):

    • had us making decisions, that made us ineligible for clinical trials,
    • or miss opportunities by those few days when my blood counts decided to fall?
    • disqualify ourselves from our first choice clinical trial by trying one  – more – thing, because we felt so pressed for time to DO SOMETHING, anything, asap.
    • getting cancer about a year too early for several, very promising therapies, especially the T-cell ones.

    How is it that I just happened to be in that rare  1.5 percent of ovarian cancer patients who metastasize to the bones?

    Good questions, no answers. How about the flip side?

    How did we just happen to be in that rare percent of people who have the wonderful, strong, support surrounding us from all sides of the world?

     

    People:

    • Who pray for us in seven different religions.
    • Who offer to help in any way that is needed.
    • Who donate time, money, food and other resources (heart and soul) to carry us through each day.
    • Who send funny/encouraging/uplifting/upper-cards every week.
    • Who will walk with us till the end?
    • Who will support Dave and Abra & her family after I am gone.
    • Who will remember them at Thanksgiving, Christmas, my birthday, mother’s day – all those painful holidays in the first few years.
    • Who will love my grandchildren
    • Who will invite Dave to Teeter Rock to see the wild horses, to hike, camp, to do the kind of things we loved to do.

    Thanks to the many, many people far – and – wide who are holding us close in their hearts and lifting us up to God. We feel loved and cared for. We feel safe in the presence of a living, loving God as we continue to live Day-by- Day. Yesterday I asked Dave if I complained or whined too much? His response, was a strong “No”, given what I have to “suffer”. Well, the problem is, on a day-day basis, I don’t feel like I’m suffering unless I’m actually in pain. And this week, the pain level has been pretty manageable, so, “Am I suffering?”

    I think, if I live Day- to Day, I’m not really suffering, especially not today when I got up, showered and dressed early, and was able to start working on finishing this post – as long as I’m not in unmanageable pain. If I can live in the moment, I do pretty well. This is where that adult ADHD comes in helpful! This is where your daily prayers make the difference. This is where not having a lot of emotional  baggage weighing me down makes such a difference; I continue to scan my conscience and invite you to scan your heart too for hurts I have caused you that you would like to have resolved. This is where being honest at this stage of life is really important. It’s not about guilt, its about freedom from guilt.When someone calls or writes and apologizes for not having kept in touch or coming by/calling earlier, it’s a great joy to just say, “No guilt!” This is not a time for making people feel guilty about what they have not done! It’s a time for affirming what you have done, andthat you have loved – even without keeping in contact over the years. Focusing on gratitude and enjoying what is, this is what helps me live day-to day and not suffer.

    Let’s get through these last weeks … With your love and support, we will.

    Peace, Cookie

    P.S. For those of you want to make contact and/or who live a distance away and really want to see me before I die, now is the time. I can’t promise lodging, I can’t promise I’ll be able to visit for a long time or go do anything with you, but I would love to see you too. I expect to see folks around Bethel’s Fall Fest, and that may be a good time for many of you to catch up with a number of people. It may be best to email or call ahead and check-in a gain at the last minute.

    We also hope to celebrate our 33 and a 1/3 anniversary with a reception/faspa sometime around the 24th of Oct. (not on the Monday).

    Given the number of visitors to the site to view this post, I think I did not send out a new post notification by email, hence, a small change here and there, and the opportunity to “notify” you of this post.  I am, however,  sorry to clog your inbox… or your rss feed… but I can’t get it to notify subscribers!

    Cookie

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    Posted in Blogroll, Cancer, Newest Posts, Whole-life Stewardship | 5 Comments

    Drivial Drone, Thurs., Sept. 29th.

    Today’s Drivel:

    • I overslept this morning by an hour and a half and woke up feeling a little queasy. I took a nausea pill, drank an Ensure and then took my pills. I quickly recovered from the nausea and have felt okay since, though with lower to mid-back ache.
    • My back pain is moving up the spine, not surprising seeing as how I have bone mets in my spine all the way up!
    • My stomach is more bloated and hard, it no longer sounds like a ripe watermelon. My nurse will come afternoon. It could be the start of ascites, which I HOPE not… But anything else might be worse, so…
    • Hospice Social Worker visit this morning, (love Ronda), looked at burial options. Love the idea of all-natural and of Mennonite ties (as in Beatrice Church). No vault required. Prefer no embalming as well. Has implications for viewing (that’s what refrigerators are for), funeral & burial timing, etc.
    • Our oncologist advisers are all coming together on their recommendations for next steps. Have weekly taxotere scheduled to start next week.
    • Am drinking the milk broth from one of my favorite soups, Corn Chowder from The More With Less Cookbook as part of a liquid lunch.
    • Good visit with Hospice nurse (love Ginger):
    • Lungs are better, less of a wheez than last week.
    • BMs are good!
    • Small intestinal bowel sounds present, but not as good.
    • Abdomen is bloated, but not with gas… she measured for future references (could be the start of Ascites). That is neither a good thing, nor a comfortable thing!
    • Oxygen good when sitting up, will have some on standby for emergencies (I’m thinking ahead here, it’s not necessary yet).
  • Had a mile “outing” with Carol, of which I walked a good half mile. Gut a bit uncomfortable from bloating, hope walking helps.
  • Pray:

    • That the bloating will resolve itself, not be ascites or the beginning of a blockage!
    • That I will not begin vomiting.
    • That I will sleep well tonight and get more done tomorrow.
    • That I will treasure my husband and time with family.

     

     

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    Posted in Cancer, Drivial Drone | Leave a comment

    Driviel Drone,Tues. & Weds.

    Tuesday’s Drivel:

    • To do today: finish post – done,
    • finish choosing Sand Creek Photos – working on it,
    • Chaplain visit today (He’s going to bring a joke, I know it…possibly a fishing joke)  – brought a story apropo to the post about strap to hang onto instead.
    • Slept really well.
    • Woke up a bit late, spilled Ensure on myself – which prompted me to finish it all, get up, get showered, get dressed (up stairs) and put away my clean laundry while I was up there.

    But/And,

    • my left hip is starting to hurt more when walking/standing. This may be where the next “issue” is . Have to look up whether it’s better to keep walking (though less, perhaps), or stop walking for exercise and “strengthening” bones as we’re told the minute we reach middle age.
    •  When the bone scan was done, I had not yet lost a lot of calcium out of the bones – an expected side effect.

    Wednesday’s drivel:

    • Had my sixth good day in a row.
    • Had an appointment with another oncologist at the Cancer Center of Kansas who had a different idea, depending on a frozen tumor tissue from my surgery to see if the tumor expresses a HER 2 receptor. I should have about a 33 % chance of having this (though research results vary widely). However, it may take a week to ten days to get those results back.
    • Had a natural BM today!
    • Was out basically all day – and survived, though I am quite tired.
    • Got frames and mats for a Sand Creek exhibit!
    • No nausea for days, I have figured out how to space the meds and meals to avoid it.

    Pray:

    • For “good days” to continue, especially if they mean things have slowed down.
    • For continued pain relief and ability to keep walking (did not today).
    • For continued good times with Birdie, my big sis by six years.
    • For the very tricky decision about starting something – or waiting another week or so.

    Peace,

    Cookie

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    Posted in Cancer, Drivial Drone, Newest Posts, Whole-life Stewardship | 1 Comment

    Drivial Drone, Monday, Sept. 26, 2011:

    A Reasonably Good Day Today:

    • Best thing is that  Birdie and I took a walk today – I walked at least 3/4 out of the 1 1/2 total miles we walked.  It felt pretty good.
    • Worked with my sister on sorting out an album of photos for a Sand Creek exhibit at Pages sometime.
    • Ate rice, tuna, pudding, chicken, broth and ice cream, and of course, ensure!
    • We’re not quite no fiber any more, but try to keep it really low, as low under a gram as we can.
    • Felt pretty good pain-wise, though I woke up with a back ache.
    • I messed up my post a bit last night and then didn’t get it done today. Coming soon…
    • I do have several things I need to finish:
    • delivering photos
    • writing thank-you’s, including a few wedding ones that need addresses, etc :-)
    • finishing some letters/emails.

    Off to watch Dr. Who.

    Good- night.  Cookie

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    Posted in Whole-life Stewardship | 3 Comments