Thursday, July 23, 2009

Rattling the Cages at MD Anderson

VP' don't get me wrong...MD Anderson is a fantastic place full of true soldiers trying to eliminate cancer. They have again been voted the #1 cancer hospital in the US, but it's a huge place and somewhat understaffed. It's not like the cruise ship Paul Gauguin we were on when we went to Tahiti, where the ratio of staff to guests ensured that you were very well cared for in all aspects of the trip. But it does help to be an unhappy, VOCAL, caregiver...totally frustrated with the problems this damn feeding tube has caused.

But maybe I should back up and tell all you VP's that Brenda AGAIN began to have more problems (symptoms) with the feeding tube. She again began to have decreased tolerance of stuff through the tube...those same old smyptoms...upset stomach, sweating, and that just miserable "I'm going to barf" feeling. I knew that damn tube had flipped again and come hell or high water it was going to be checked and FIXED TODAY!!!!

I started making phone calls this morning and got the dang ball moving. I caused such a stink about Mr. Lucky being such a waste of time and wasting everyone's time that we have consistently been getting Emily and she has never been late...never!!! So when Brenda went downstairs for her treatment, I headed to the radiation doctors/nurses area to start rattling cages. It's always so much better when a plan comes together and it actually happened this afternoon. It sure helps when you arrive in PERSON and you've already been through this game before. We were going to get the tube fixed today!!!

And we record time. It just shows that even in a big place...things can happen quickly when everyone works toward the same goal. We got Brenda back into Radiological Intervention and in no time they had checked the tube...yep! It FLIPPED AGAIN!!! GRRRRRR! Well they pulled it out another inch, flipped it back into the correct position and resutured it back into place. With driving from the main clinic to the Mays clinic where this department was, parking, and getting to the main floor...we were in and out in about 1 hour and 15 that's what I'm talking about. Efficiency can happen at MD Anderson along with the CURE!!

So here we are again...the tube is working correctly and we've gotten some pain meds and food into our girl and now we're actually watching a movie...actually I think Bren is sleeping...she sure needs to after what she's been through. I sure hope and pray this tube stays were it's supposed to! Lord VP's...just send us positive vibes and all the positive energy you can spare. Maybe with all you help we can keep the damn tube in place.

Just wanted to give you all the latest saga in the road to the has certainly not been without BUMPS!!

Nurse Dee and puny Chemo-sabe


  1. Nurse Dee - we have bonded. Your ability to get things done brings tears of joy to my eyes. It is surely hard enough to get through each day with the treatments and appointments that Brenda has to endure. There is no need to factor in "the flipping feeding tube" and the endless delays. One can only assume it must be maddening. I am so happy things got done for you today and you and 'she's so rad -Chemo sabe' are comfortable in your temporary digs.
    My motto is do whatever it takes to get results. Yell, scream, stamp your feet, send Karen to make a fuss on your behalf, roll on the floor in full blown tantrum... well maybe you want to hold off on the full blown tantrum lest you find yourself in the Psych Unit. Hopefully you are not watching Catch 22 tonight :) Just when you think you are out - they keep sucking you back in. Of course I am not speaking from personal experience on the latter part of this paragraph ;)

    Someone very wise, or funny, once said - "Only a true Texan knows the difference between a hissie fit and a conniption fit and that you don't "have" them, but "pitch" them." Pitch away my friend.

    Glad to hear things stabilized a bit today. Rest well tonight knowing you and Brenda have all our energy sending positive vibes your way.

    Tomorrow afternoon my niece and I are heading south to Baltimore, Maryland to watch my beloved Chelsea Soccer Club play AC Milan in the World Football Classic series. GO BLues!!!! I will wear my Texas Cheerleaders outfit for this event as well so I get appropriate use of the dang thing and I can cheer for Chelsea and my Texas two-some at the same time.


  2. I'll send my pitchfork if you need to pitch any more fits. You can stick it in Mr. hot pants while you're at it. It sounds like Nurse Dee Dee has everything under control but you can tell Them folks that I said, "Don't make me come down there!!!"

    Marshall Vic

  3. I am so glad you were able to get everything straighten out (no pun intended or.... as Evelyn says "I can't do anything straight").

    My experiences with hospitals/healthcare is they are mostly well intentioned but very overworked & understaffed... sooo the job of the caregiver (aka Nurse Dee) is to be a very upfront firm advocate as often as needed (and it is usually a full time job)... this helps people do what they need & really want to do & puts you/Brenda at the top of their list of things to do... you know the squeeky wheel usually gets oiled! Good work Nurse Dee!

    Smooth sailing, smooth sailing, smooth sailing...

    Lots of Love, Hugs & Blessings to you both,
    Cathie & Evelyn

  4. Dee- Good job on being forceful this time and getting on top of the feeding tube problem again. She had been on such a good roll that there was NO way she could go backwards. That was her only nutrition poor thing. I saw first hand the things she tried to eat herself and then couldn't or what sounded good then tasted terrible. That tube issue would of devastated her again. Whew......way to get action on that one. Did she have the same guy fix it again? You both seemed to like him. Glad she is back in her little feeding regime in her little corner of her apt relaxing and getting nourishment. I have a visual now :)

    I got your fun just to get it to you :) Glad the "cop commander" is coming out in Peeker need that kind of help at times to keep you on track and healthy! God love her! Hope today is another good day. Think of you lots!! Hugs to you!!

    Love you Sis!
    Rhonda oxoxoxo

    Ok Michele... the name "Peeker"..Ever since I have know Dee she loves gifts and can't stand to have them sitting in front of her for days if she can't open them. Especially at X-mas time. Too much excitement ha ha..She is known to "peek" a litte. So Brenda has to hide them really well, out of sight out of mind. Or when I send her gifts I use dark paper and all my labels say "no peeking". It's just a running joke we all have had all these years and it just stuck. Even my kids call her that. So no big story here......I know you were looking for something deeper ha ha.. Just a cute inside joke is all :)


  5. Ha...cute Peeker story! It did have us wondering! Well, Dee can add a few more names to her roster! What a member to have on your team! She rocks in every sense and we feel the momemtum building as the countdown to the cure comes even closer.

    Brenda...You're almost there! Thanks for being our role model as you've manuevered through this maze of mysteries. Your gifts of diligence and determination are ones that we all admire.

    Bonnie and Jackie

  6. A quick note:
    Chelsea 2 A.C. Milan 1
    Go Blues !!!

  7. Hi Chemo sabe and Most Terrific Nurse Dee,
    Hopefully you are both sleeping now and will not see this until the last two weeks are in sight. We are still here, the Village is still here and this round of treatment is still here. The difference is we are here forever and the treatment regime is here for a mere two weeks. Goodness gracious we are aware how difficult this two weeks will be - but it is a must so let's all honker down (trying to talk Texas here) get through this part of the plan and chart the next course.
    Please know we are here. Use us, lean on us, yell, scream and curse (well maybe not curse the FTC gets a bit wiggy) but know that we are your friends and are here for the whole trip.
    Smooth sailing, smooth sailing.
    Feel our hugs as you start the week
    Love ya both

  8. Hi just a quick note to let you know we are thinking, praying & sending positive healing energy to both of you... Haven't heard from you for a few days - hope all is well or as well as can be expected under the circumstances... Hoping this week is much smoother sailing than last week...
    Lots of Love, Hugs & Blessing, Cathie