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, 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 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 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 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 are such an important part of our healing. Hugs to you all...

Dee and a sleeping and nose-breathing Brenda

Monday, October 5, 2009

Day One Recheck Update

Hi VP's...well day one is behind us. Here's the scoop. We had to get up way, way too early. The alarm went off at 5:30 am and we got over to the clinic by 7:00 to start the day of tests and appointments. Now remember that Phoneix is 2 hours BEHIND Houston so we really got up at 3:30...UGH!! All the paperwork that we read on what to eat befor a PET scan told us that Bren could take her she did. We watched what we ate the night before when we went with Paula to Joe's Crab Shack. We thought all was well until the folks in diagnostic imaging told us that Bren should NOT have taken her liquid Vicodin this morning... well we thought that would really mess things up, but we got rescheduled at 11:00 so all was still on track.

We used the time to get Brenda's feeding tube OUT!!! YEA!! Bren is so happy that thing is gone...she said that it just makes her feel a little less like a cancer patient. HECK! We all know that she isn't...TOTAL WELLNESS!!! We also got her blood work done and made it back to the PET scan place for the tests...that one takes 2 hours!

We had enough time when Brenda got out of the test at 1:00 to go grab some lunch in the cafeteria and then head for Dr. Hong's office. I was now getting nervous so I popped some Ativan so I could actually be present to hear the news...good news!

Doc Hong came in and said that althought the scans had not been read by the specialist that does that, he looked at them and saw NO ACTIVITY IN THE SINUSES OR BRAIN. (Yes! Brenda still has a fantastic brain that works!!! know what I mean!) He did say that there was some small activity on both sides of her neck but no one is completely sure of this right now. It could be continued healing from all the radiation she received there, it could be residual disease. He wants Bren to continue with the rest of our appointments tomorrow and all the docs would confer. He mentioned that he thought we should come back in a month to get another PET done. It's still relatively soon after radiation stopped and they gave her so much. If she does have to have these areas removed it shouldn't be a huge process...everyone says that it's relatively simple and definitely not the MAJOR reconstruction that the folks back in Phoenix wanted to do originally...YIKES! We should have more info on this from the surgeon tomorrow.

So we really do have great news that there appears to be no disease in Bren's head...we were really worried about that. Thanks to all of you for the positive energy toward TOTAL HEALING...we are definitely on our way.

Tomorrow is the dentist, our new radiation oncologist, and the surgeon...then it's off to the plane and homeward bound with smiles on our faces. We'll have more news to report tomorrow.

We have felt your strength coming at us for all directions and can't thank you enough for being such a strong part of our healing circle. We've spent a lot of time with Paula and Jason in between all our appointments. J and P...We sure thank you guys for all the info you shared and the good times building our friendship. You both are so special and it sure helped having you touch bases with us and help us through this first visit. Hey Amanda...Dr. Hong asked how you were sure made an impression...he asks about you all the time. I told him about your new venture...he was impressed!

So I am totally pooped and whipped out so it's PJ time and I'm hitting the sack. I'm reading Dan Brown's new book "The Lost Symbol" and I'm in a good section so I want to get back to that as we keep one eye on the football game.

Love to you all...your energy is so powerful...remember the mantra for tomorrow:
We're happy and grateful for Brenda's total wellness.
Dee and a well Bren...

More tomorrow so tune in...

Sunday, October 4, 2009

Off to Houston

OK VP's...your true power and visualization for Brenda's TOTAL WELLNESS is really upon us!! I know that this village has incredible power and can send out only positive thoughts to help us visualize and accept gratefully this wonderful gift of life and wellness so Brenda can fulfill her destiny. We all know the incredible gifts this dear woman can give the world...her story will only continue...and her presence will only heal.

We are off to the airport in about an hour so I just have time to thank all of you for the calls, e-mails, prayers, dinners, laughter, bingo, well wishes, care of the dogs, phone calls, etc. of encouragement and love. You all are so very dear to us and these messages, both spoken and unspoken, mean so very much.


We're taking the laptop so I'll write when I know more. Until then...hold us in your thoughts and prayers and know how much you all mean to us.

We bless your light...
Dee and Brenda