Wednesday, October 7, 2009

Update from Day 2 at MD Anderson

Hi VP's...I know you've all been anxious to hear the results of our Day 2 appointments so here I am with the update. I would have written last night when we got home but we both were absolutely pooped and just went to bed to try and get some much needed sleep!

So Tuesday started off bright and early...remember that we are NOT morning folks...ugh!...with the dentist. No day should start with the dentist...Ha! Dr. Chambers is a really great guy and a true delight to be with. He looked in Brenda's mouth, was delighted she was continuing her facial/mouth exercises, and declared her mouth and gums infection free and looking good. He answered a ton of questions about the swelling in Brens face and neck...quite common after all the radiation she got because the lymph nodes have been fried and the fluid is building up. He said that that would eventually go away as soon as she healed some more and the fluid found other ways to drain. We got some supplies and a couple scripts for oral spray and fluoride tooth paste and off to breakfast at Le Peeps we went.

After breakfast we headed back to the hotel...we were both pooped still. The time change really wackes us out and I must say that the stress is a tad bit draining...gross understatement!!! Then we got ourselves over to the radiation department for our 1:30 appointment with Dr. Morrison...our new radiation oncologist. Everyone says that this guy is brilliant but is a man of very few words. VP's...that was another gross understatement. He came in and just smiled at us and looked like he wondered what we were doing there? Now we had a 2:00 appointment with Dr. Gillenwater, the surgeon, so we needed to get this show on the road...he was a good 45 minutes LATE!!! We asked the questions and he gave us one word answers. His resident was a little more vocal and we learned that there were SEVERAL spots on both sides of Brenda's neck that were lighting up. No one really knows if that's residual disease or if that's the tissue continuing to heal. You can feel some enlarged nodes...the really bad boys when we started this odyssey...on either side of Bren's neck. No one knows right now if this is dead and hardened nodes or if there's still nasty activity in them. HUMMMM! We didn't want to hear that more than a couple nodes were lighting, but it is what it is!!! Morrison did agree with Hong that it appeared that no tissues were lighting up in the sinuses or in that brain lesion...tremendous good news.

So up to Gillenwater's area we went. We got into an exam room and waited and waited and waited!!! So now it was nearing 4:00...we had a 2:00 appointment which Morrison made us an hour late for!!! OK...I was getting nervous about our time frame here and put my Chief hat back on and went searching for the nurse!! I found her and explained that we needed to be at the airport at 5:00 for a flight...she told me I shouldn't have done that and I just looked at her in as big a Chiefly "command presence" I could muster, and said I did it and please help us get the doc in to see Bren. BINGO!!! We were next up. Dr. Gillenwater is really a great lady...friendly, talkative...you know the kind...instant bonding.

I'll just give you the medical bullet...she concurred that she didn't see any concerning activity in the sinus or brain lesion area...GREAT NEWS!!!! She did see, like everyone else, the activity in the lymph nodes. She agreed with the recommendation of Dr. Hong that we wait a month and redo the scans to see if these are still there lighting up. She said that if they are, she wants them OUT!! Even if they are dead tissue and still enlarged, she recommends getting them out. She put it quite simply that we "don't want the cow out of the barn." So I guess we'll just move the barn and the cow to another planet!!! Works for us! She recommended that we schedule the surgery now and if all the nodes are reduced and the scans are negative then we can cancel the surgery...if not, we won't have to come back again.

We asked her about the time frame for a surgical process and she said to schedule about a week. The surgery itself would take about 4 hours and then Bren would be in the hospital about a day or so. Then we would just need to remain in Houston to be monitored until we knew the healing was going along without any glitches. She did mention additional chemo and I guess that's a possibility to do cleanup but that's Dr. Hong's call. I sure hope Bren doesn't have to go through any more of that.

Our psychic contact said that there would be a "small glitch" but then Bren would have "smooth sailing." So far Carol hasn't been wrong and I'm really hanging my hat on the "smooth sailing part." Right Village? Thanks Vic for sending that piece of info...that really helps keep our focus on the eventual results!!

We did ask Dr. Gillenwater why Brenda couldn't breathe out of her nose. She poked around in there and said that it was scar tissue!!! YIKES! This is what Dr. Mello was afraid of. She siad she's never seen that before...thank you Brenda for being such a rare bird!!! Now please stop that! Well, Dr. Gillenwater began pushing on the tissue with a long q-tip and she said that it was still on the soft side and maybe with a little pressure she could get it broken...so she donned her miner's light and armed with that q-tip went digging for AIR!! BINGO....she got through the right side. Brenda was in heaven over the opportunity to breathe out her nose! Delighted with the success, the doc went into the left side...no luck with the q-tip so she put on a new glove, loaded her little finger up with surgelube, and into the left cave she went. She pushed and pushed and pushed...get the visual?...and pushed and just when Bren was about to pass out (well not really, but it HURT!!) Bingo...she broke through the scar tissue on the left side...YEA!!! Brenda was such a happy camper!! Even though she now had a bloody nose she would breathe. YEA!! The issue now becomes...how to keep this open? She would have packed it open if we were going to remain in Houston but we're trying to keep it open with nasal rinses and regular digging on our own with the q-tip. WONDERFUL! She told us how not to puncture Bren's brain...No, No, No!!! The brain remains untouched!! Brenda's the miner this time...I'm just the coach!

So that's about it...we have more to do. We're happy with the news, but we know there is still more work to be done to reach TOTAL WELLNESS! We ask that you continue to pray and say the mantra...this could all be a mute issue if the scans show no activity when we return in November. Thanks from the bottom of our hearts for hanging in there with us. Please keep up the good work!

The flight home was uneventful...not like the crazy one the last time we returned. We landed ahead of schedule and got the car...zipped right home...and crashed! Now we leave to drive for Tucson in an hour to get the dogs...then life will almost be back to normal for another month! YEA!!

Don't worry...we'll definitely keep you posted...you are such an important part of our healing. Hugs to you all...

Dee and a sleeping and nose-breathing Brenda

6 comments:

  1. Good job you 2, way to go to Houston and kick butt and return! Glad the news is going pretty well so far. The q-tip story kinda makes you squirm tho....yuk!!

    Love you guys!
    Sis

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  2. Hi Guys,
    Glad to hear things went well, and Brenda can now breath out of her nose. You guys are so medical now, you really impress the heck out of me. You can both be on my team at the hospital anytime. Keep up the good work. Total Wellness is just around the corner.
    Miss ya lots-Love to you both
    Karen

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  3. So happy that your trip home was uneventful and you can breathe through your nose. There's a reason not to go into ENT medicine....picking other peoples noses......that even grosses me out!

    All kidding aside, I have faith that once this glitch is over you will achieve total wellness!


    Vicky

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  4. Glad I missed that nose "picking" event - it totally grossed me out just reading it... but definitely worth being able to breathe through your nose!

    So it looks like smooth sailing with just a little bump in the road (just mixing my metaphors here...) Good job you two!!!

    And how about those Mercurys!

    Lots of Love, Hugs and Blessings

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  5. Hi, Brenda & Dee:

    So happy that the news has been so positive! Especially glad that your flight home this time was not the nerve-racking flight from hell . . .The girls and I will continue to keep your healing mantra in our hearts and minds. :) I'm off to Disneyland to meet my sister Bobbie to celebrate birthdays! And, when you're getting your good news next month, I'll be celebrating Carissa's 21st birthday in Vegas! Woo hoo. We will all have great things to celebrate come November.

    Dee, your story-telling just keeps getting better and better. My stomach turned when I thought of the pain of having that scar tissue shoved out of the nasal cavity. UUUUGGGGH. But, whatever it takes to give her some relief with her breathing, right?? !

    Love to you both. . . Keep the good news coming.

    R

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