Tuesday, November 3, 2009

UPDATE: Getting Ready for Another Trip to Houston

Yes VP's...the blog continues. I didn't abandon you...really! I just took a break to focus on stuff around here in Mesa plus...my #1 job... helping our favorite gal heal...that's a VERY, VERY slow process. So here we are once again with an update.

We were all scheduled to go back to Houston this week to have the scans again and then to have surgery, if needed. I had arranged everything...flights...another apartment...the car...you know the drill. Then a little over a week ago, I noticed that someone had removed the surgeon (Dr. Gillenwater) from our appointment schedule. HELL!!! She’s the main player in this next stage of treatment. Then I noticed they moved the appointment to December 7th...what the hell??? I thought we were trying to stay on top of these nodes if they still contained residual disease and needed to come out so the cancer didn’t fly someplace else or didn’t get another foothold. So we got on the phone with the surgeons office and raised a little hell. Well...I shouldn't say "WE!!" I got on the phone and raised a little hell!! So now...Everything is pushed back a week instead of another month. We really didn’t want to wait until December. We now fly into Houston on Nov.12th, see Dr. Gillenwater and Dr. Hong on the16th.I just noticed that they have now made the appointment for the scans on the 17th. Damn...that's sort of having the cart before the horse so we'll get back on the phone and see what we can do to change that. Pre-op appointments are set for the 19th and the surgery is scheduled for the 20th. If we don’t need the surgery, we'll just cancel that and come home. The nodes are still there however and so we are thinking they will just want them to come out. Bren will be in the hospital for about a day and then they want us to stay 7days to do post-op follow-up. That puts us right smack dab in the middle of the Thanksgiving holiday...wonderful!!! At least is isn’t Christmas! We have planned to come home on December 1st thinking the surgeon will want to see her on the 30th.

So I’ve spent the last several days rearranging all the arrangements I originally arranged...groan! I don’t have to tell you that these changes have added more pennies to the original trip cost and that just ticks me off. I think I’ll give the bill to the nurse that just erased us form the schedule and then DIDN’T CALL US! It’s hard enough to mentally prepare for all this, but then to make changes and not call to explain...well all I can say is GRRRRRRRRR!!! Brenda made me promise not to chew folks out until AFTER her surgery! Ha!
She said it was HER throat they were slitting...not mine!!! OK Bren...I'll be nice! I'll TRY to be nice!

The healing here at home has been very slow. Bren still sleeps through most mornings. She gets up around 6:00 am to get her nose cleared out...lots of drainage...and she's trying desperately to keep that scar tissue from closing her nasal airway. She takes her morning meds and just falls back to sleep until around 11 or noon...then she's pretty much up for the rest of the day. She's even back to seeing our trainer 3 days a week for a half an hour for some rehabilitation...it's really not a workout...it's just getting her muscles to work again and build up some normal strength to do just day to day things that we all take for granted. So the medical folks out there shouldn't panic...she's not training for a body building contest or a marathon. She said it feels really, really good to just get all this moving again.

Eating is a huge challenge for our gal...she's sooooo thin!! I'm such a nag when it comes to getting good food down her. She still has no taste buds and no saliva so there really is no joy in eating anything except to fill her belly. She has to drink a ton of water and eat very slowly and chew a lot to get anything down. It takes her twice as long to eat and she just fills up with all the water she has to drink. High Protein Boost nutritional drinks are helping us keep the calorie count UP. What we eat now is based solely on what she thinks she can get down. I'm really not food driven at all so whatever she wants to eat is just fine with me.

The weather here has been spectacular. We hit record highs about 3 weeks ago and then the temps hit huge lows (that's lows for us in the desert...like low 60's during the day and mis 40's at night.) It snowed up in Flagstaff and there was some snow flurries at our cabin in Strawberry. Then the temps turned around once again and today it's supposed to be 94!!! It's just that time of year. We've gone out several times to have lunch and have just sat outside to enjoy our food...it's fabulous. The sky is a bright blue, there's no wind, and the sun is warm and welcoming. WONDERFUL!! The only bad thing is that there is NO rain in sight...we really need some moisture!

I've been enjoying training our dogs over the last 6 weeks. I've taken our 5 year old Abbie to Rally classes (that's a form of Obedience Training) and I've taken Tanner, our 2 year old to Basic Obedience. It's been great for all of us. I'll get them back into classes when we get home. I've definitely gone to the dogs!! Ha!

So that brings you all up to date with our ongoing MD Anderson treatment saga. We hope this blog post finds you all well and enjoying the fall weather. We're taking both computers back to Houston so watch for more blog updates the in the days ahead.

Toodles from the beautiful desert southwest.
Dee, Brenda, Abbie and Tanner

6 comments:

  1. Hi...One day at a time is just that, but healing IS happening, so yahoo from Illinois! Wow...the power that schedulers have. I can see how your patience would be running thin. Our arms of support are extended as your journey continues.
    Love,
    Bonnie and Jackie

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  2. Hola ladies,

    By now you know I would not be pleased with the scheduling person so I will not even go there.

    It is good to hear some stories of life as usual for you two. I am sure there will be more of those in the months to come. In the meantime, keep in mind that Brenda was taken about as close to death as someone could get without, well you know. It will certainly take some time to regain her strength, weight, musculature and albeit new, sense of normalcy. However, I have no doubt with her sense of commitment, competitive spirit and darn tooting (medical term) tenacity, she will get there.
    Good to hear the laptops are going with you. Maybe we can Skype you from Puerto Vallarta. Just think I can prop my laptop on two pool chairs, get two non-alcohol beers and you are there with us. If you plan on staying for the week I'll need to think about a Looonnnggg extension cord :) Another thought is focus on getting well so you can be on a trip soon - in person.
    Love to you both and we will talk soon.
    Michele and Karen
    P.S. After the surgery - give that scheduler a clue into the chaos she caused for you both.

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  3. Thanks for the update Peeker! Also Lovin our skype conversations lately!!!! :0)
    Press On Sista, the road ahead will be SOOOO worth it. You WILL HAVE the CURE!!!! YIPEE!!!! Keep up the strength!!!!!

    Love and hugs to you both!!
    Rhonda

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  4. P.S. Hope you all had a wonderful Halloween with fun and laughter like we had this time last year!!! I have fond memories that I will NEVER forget!

    Love you all!!
    Rhonda

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  5. Yes sooo sorry to hear you would be missing Thanksgiving dinner up in the high country! So this year I will have to break down and cook the turkey! Marianne & Jan and my brother Peter and another couple, Barbara & Annie will be at our house for Thanksgiving dinner this year & if they cancel surgery and you come home early just come on up and we will have enough for two more I am sure!

    And if surgery happens then you just come up when Brenda is feeling up to it and we will do our traditional Thanksgiving get together on another arbitrary day.... because we have so much to be thankful for just having our gal Brenda around!

    Lots of Love & Blessings to you both... and if we can do anything just let us know!
    Cathie & Evelyn

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  6. Hi, ladies!

    November 12 has to bring good news. It is Carissa's 21st birthday. We will just have MORE things to celebrate than that she is finally of LEGAL drinking age.

    Glad to hear an update. Been checking religiously. Brenda, keep building your strength. You can get some extra sleep for me . . . I've been rather sleep deprived with working and going full-time for the Masters. Yikes.

    Dee -- you are not the only one whose life has gone to the dogs. The girls talked me into a second "baby" the middle of July. I come home to shredded EVERYTHING almost every day! Rex and Remy rule the house.

    Glad to know our Brenda is still fighting. Prayers are still being lifted up. Much love and good energy sent to you via the blog and the universe.

    No matter where you are at Thanksgiving, I know we all have a lot to be thankful for. Our Brenda is still fighting, and you can be together, whether there's a turkey, or one of those delicious liquid drinks that have been Brenda's sustenance. :)

    Keep us posted. xoxo

    Rosie

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