Flipper Hadn't Flipped...BUT...

OK VP's...just when you think you're in the home stretch...some new path emerges! So you heard the story about how Brenda was just going to swallow herself back to health, but there was much more to the story to be told. Here goes...

I went to the store and got all the supplies we needed to have Bren ignore the feeding tube and just swallow her way HOME. I got the new "juice" all mixed up and Brenda started trying to get it down and...oops...there she goes again...running to the bathroom and everything ends up in the toilet! DANG! It was just at that "well now what the hell do we do" point when the Diagnostic Imaging Department called asking where Brenda was because she had an appointment at 4:00 pm to have the tube checked. Well that was a gift from God, and we jumped in the car and off to the clinic we went.

I'll make another long story short...IT WASN'T THE TUBE!!! It was sitting right where it was supposed to! Well heck...why was she throwing up then??? So there we are walking out the main entrance to the clinic and Brenda has another vomiting attack...these were getting worse and we're about to enter the weekend! Now that is NOT a good picture for the nurse. Brenda just was getting punier and punier. She was getting weak and she just looked at me and said..."Let's just go home." I just knew that wasn't really going to work, nor was it the best thing to get Bren back on track, so a really nice lady helped me get a wheelchair and off to the MD Anderson Emergency Center we went. I knew this wasn't going to be pretty on a Friday night, but its what needed to happen. Brenda was getting dehydrated and I needed help in getting her tummy calmed down.

The waiting room was packed! We got there at 6:00 PM and after Brenda threw up again in the bathroom of the waiting room...and that episode was even worse than the others, a lady (Paula) who was sitting in the waiting room because she fell on her face and who went through the same radiation treatments that Brenda is going through about a year ago, came over and talked to Bren. She was so kind and so reassuring. She just knelt on the floor and held Brenda's arm and said that she had been where Brenda is and that this would pass and she would be fine. It was just the perfect contact that our poor gal needed right then. She was truly a gift. We chatted with she and her husband who is a nurse at MD Anderson. What a sweetie she is.

So Bren was moved to a bed in the hall...there are LOTS of beds in the hall, with lots of hurting folks. It was a little easier for her lying down so that was a good thing. An Internist also came and talked to us and wrote orders to start an IV with anti-nausea and pain medication...this was around 8:00 PM. Around 9:30 PM (still no IV, etc) they wanted to do an x-ray of Bren's stomach to rule out any obstruction or something and she threw up in the X-ray room...I was getting a little frustrated...wasn't there anyone around that could start the IV and meds the doc had ordered. OK so "Chief Taylor" came out again and I started asking why an IV couldn't be started...well...around 10:00PM Andre, our assigned nurse, finally started the dang thing and got the meds going. Brenda was such a hurting pup!! At least this would begin to help her feel better.

Around 11:00 PM they finally moved her to a room that wasn't in the HALL! There was tons of activity all around until about 3:00 am when things began to calm down. You guessed it...they were going to keep Bren all night and they would see how she was in the morning. They wanted to get her pain and nausea under control and then try a can of formula through the tube to see if they were able to calm the beast down and have her tolerate food.

I think if I won the lottery, I would buy all new COMFORTABLE chairs for all the facilities at MD Anderson. The chair in the room we had was not designed for long time sitting...like the all night type. Man! When Bren felt a little better she looked at me trying to get comfortable and we both ended up sharing the bed so we could get some much needed sleep. They kept checking or her and I had to go back to the apartment around 5:00 AM to get a can of formula. No! They didn't have the kind we were using.

You know they did a good job at getting everything under control. They thought some of the problem was the pain medication so we backed off on one and they changed another. Along with these and the anti-nausea meds, it seemed to do the trick...knock on wood!!! Please God...NO MORE!! We got the feeding down and then I wanted to wait to ensure that it all wouldn't come back up. I took a very drugged and tired "Electra" back to the apartment around 9:30 AM...UGH!! What a night! The good news is that she's feeling better and I've already gotten the new meds and started her on another can of formula because it's around 2:00 PM now. I just want her to sleep. She did take a shower and did her mouth and nasal rinses to help her breathe but now she's comfortable.

I just want to reassure you all that she'll be fine. Going to the ER and struggling through that LONG night was just the only thing we should have done. She's resting comfortably, she's tolerating the feeding so far, and I'm about to pop in a movie. I've got the laundry going and all is back on course. She'll be even better tomorrow and then Monday is the LAST DAY of this frying process called radiation. After this next week we ought to see the side effect stabilize and then the healing can begin. I know she's going to sleep most of the weekend and that's perfect.

So there ya have it VP's...the seemingly never-ending saga continues and we so look forward to that bell ringing on Monday...we want it OVER WITH!!! Needing all the healing vibes our villagers can muster.

A tired Nurse Dee and a Sleeping, Snoring Electra

Flipper Has Attacked Again!!

VP's...OK...now Brenda's REALLY PISSED!!! Since Wednesday morning we have been struggling with the dreaded feeding tube AGAIN!!! She began throwing up after we introduced either meds, water or food through that damn tube. Now it didn't do it all the time, and although the symptoms were just a tad bit different, you get real intuitive with this stuff and we KNEW that it's that blasted tube once again.

We jumped on everyone last night with voice mails and then showed up personally after Bren was finished with her morning radiation. Mary and Denise have been sensational...we wanted to get the tube changed. Here's what we learned after talking with the doctor that we really should have had put this *#%^&$ device in.

Because the tube has not been in for a period longer than 6 weeks...the scar tract between the stomach and the outside layer of skin has not completely formed. Because that hasn't formed they can't change the tube yet. There was the option of trying to place a different connection but that was iffy because of the tube placement and they wouldn't know if that was possible until they did an X-Ray. So the only real alternative was to go back to IVR and have then reflip the tube. I probably don't have to tell you the words Brenda had for that alternative. She is absolutely beyond frustrated with this.

So the absolutely pissed off, stubborn Brenda has decided that they can stuff this feeding tube where the sun don't shine...she has decided in true Brenda fashion that she's going to get her nutrition via mouth...NOT via the tube. So we use Vicodin to dull the pain in her throat and have visited the local GNC store for a Weight Gain powder that Denise recommended after we told her what Brenda wanted to try and do. Believe me folks...she'll do it...there is absolutely no doubt in my mind. Now the goal is to keep her weight up through these supplements taken by mouth and have the dang tube out around August 19th. I think we'll take it to the shooting range and use it for target practice. I was rated as an expert marksman during my law enforcement career so there's no doubt in my mind that I'll make swiss cheese out of that tube!!!

So...Flipper's career is quickly coming to an end!! I've got to go back over to the clinic this afternoon and get a book they ordered for us called "Meals through a Straw." Frankly it doesn't sound very yummy to me but we're too close to the end of this and Brenda will not let anything stand in her way to go home on the 21st!

The good news is that Bren only has ONE MORE RADIATION TREATMENT and she rings the bell. We are so looking forward to Monday morning around 7:30 am. Set your alarm clocks and give a "holler" in celebration. Mary has already booked our return appointment for all the scans and tests on October 6th. So we'll have a nice bit of time to get our new lives established before we have to come back.

So there ya have it...just as there is in life...there's always something in this journey toward the CURE. The secret to both is being flexible, adjusting and adapting to the bumps and new paths in the road.

Thanks heavens for pain killers!!

A very frustrated Nurse Dee and a Pissed-off Brenda

Great News from Dr. Hong

Hi VP's...if you've been following this blog you know that we anxiously awaited our visit with Dr. Hong this afternoon. He was going to let us know if Brenda would have to go through another round of chemo or not and if we could finally go home and do some healing before we had to come back for all the scans...we were holding our breathe as he walked into the room.

When he announced..."NO CHEMO"...Brenda jumped up and hugged him. Man! Did that surprise the good doc!! Ha! You should have seen his face. Ha! He told Brenda that she has gone through a really tough treatment...one of the toughest...and she should be very proud of how she has handled all this. Well...we are incredibly proud of her...aren't we? She even gets to have the PICC line out tomorrow...now that's additional progress toward the CURE and normacy.

He said he wanted to see her again after radiation finished...hey!!! Only 5 more days of that!!! That's good...her neck is so burned, swollen, and raw that he didn't even want to try and feel around in her neck. They said that was even going to get worse!!! Here was the other critical question...we asked if we could go home on August 21st!!! Our fingers were crossed...we weren't breathing. YES!!! We can go home on the 21st!!!WOOPIE!!! Arizona...Abbie and Tanner...here we come!!! We were so excited that we went out and celebrated by having iced mocha's at Starbucks!!! She can actually get that down!!

The plan is that we'll have to come back about 6 to 8 weeks from the end of radiation for all the scans and visits with all the doctors for their follow-up assessment...those will be nerve wracking appointments...but we're just focused on going home right now. Again...the great news is...NO CHEMO so we are officially retiring the name "Chemo-sabe." Now you all can come up with another nickname for her. Michele??? Do you have any thoughts on that?

I know you all were anxious to hear today's news...so there ya have it. Tomorrow Bren starts double radiation treatments for the rest of the week. The bell gets rung on Monday. I've included a picture of the famous bell so you could all help ring it with Brenda on Monday about 2:30 PM or so Houston time. Ding...Ding...Ding!!! Don't worry...I'll take pictures.

After Starbucks we went right over to Office Depot and Big Lots and got some packing supplies. The plan is that we'll mail a lot of stuff home and then pack the rest in the car, drive it to the airport on the 21st...meet our friend who's going to drive the car home...turn over the keys and the map home...and get the next plane out of Houston bound for Phoenix!!! I'll drive down to Tucson the following day and get the dogs!!! Abbie and Tanner...get ready...you're finally coming home!

So there ya have it VP's...the news we've all been waiting for...the light at the end of that tunnel is really bright!! Thanks for hanging in there with us...you'll never know how much that means to us. Now go help us celebrate!!

Nurse Dee and "new name needed" Brenda

A Quiet Saturday Morning at Houston Central

Well week 6 of radiation is history VP's!!! Only 6 more radiation days / 10 more treatments (remember there are 4 days of double treatments...) and Brenda can ring that bell that she's finished with this nasty radiation. I can't even begin to tell you how nasty our poor chemo-sabe's neck is. Nasty, nasty, nasty. In spots it's blistered, weeping, and raw. We have special gel sheets that we put on the nasty spots at night just to soothe these really angry wounds. She is such a trooper and I'm a great mixer of the drugs to keep her comfortable. We've got a great concoction worked out so she sleeps solidly (that's another word for totally drugged....Ha!) through the night.

She's actually doing a lot better than she was about 2 weeks ago. Mr. Flipper (the feeding tube) has decided to "play nice" and we're getting meds, food and water in like we should be doing. We have her pain down to a 4 or 5 (scale of 10) and we've even got a little weight back on her. Now that's music to all our ears!! All your positive energy is really helping get Bren through these last hard days...we know it. Here's another request...please send your collective positive, healing energy on Monday at 2:00 to 3:00 pm Houston time. That's when we see Dr. Hong and we're hoping, praying, begging, pleading that he won't say that Brenda will need another round of chemo. We are so hoping that he'll say just go home and heal from all this and come back in about 8 weeks for the follow-up scans. PLEASE!!!!

When you see Bren you're going to have to ask for her autograph because she is becoming an MD Anderson "star." We all know that she has had one of the best attitudes imaginable through this mess, and we also know what a nightmare the feeding tube was initially. Well Denise, our dietitian, asked us to be on a video they're producing about feeding tubes!!! Ya just gotta laugh! So yesterday we came in early for the taping...you know all that "cut, print, wrap" thing. There's another part they want to tape about the cleaning of the wound around the tube so we'll do that before we leave for HOME!!!! We all know that Brenda was a star before all this began...now she's a "star" at MD Anderson!!! We're getting a copy of the final tape...autographs upon request!! Ha!

We're still hoping for August 21st or 22nd depending on flights and the final coordination of all this...to go HOME!!! That is such music to our ears!!! We've even begun to pack up some boxes of stuff to ship home because I don't think all the stuff we've collected over these past few months will fit in the car!!! Ha! We are definitely "Gear Girls!!" Heck! We have a carload of just medical supplies!! I will never begin to tell you how crazy happy "Going Home" makes us feel. I think that's just the perfect medicine that Bren and I need right now, especially for her continued healing. HOME...HOME...HOME!!!

I've got Chemo-sabe's meds so fine tuned that I think we're even going to try and take in the new Harry Potter movie tomorrow morning...now that's some darn good drugs!! She might sleep through most of it but at least we get out of the apartment and do something that feels more like our normal life. I think it was Bonnie who asked what Brenda was looking forward to when she got home. We were talking about that the other day and although our lives will never be the way they were before this diagnosis, we both are looking forward to recreating the "new" normal for us...back in our home...with our dogs, friends, and family around us...celebrating life and each other and trying to make a positive difference in this world.

So there ya have it for Saturday morning. Brenda is sleeping on the couch while I get a feeding in her. I'm doing the laundry and will do some more packing this afternoon. YEA!!! Wishing you all a wonderful Saturday.

Nurse Dee and a sleeping, drugged, Chemo-sabe

Marshall Vic is Back and News from Houston Central

Hi VP's...it's Wednesday night and time for an update and a brand new Marshall Vic Chronicle. She has blessed us with more priceless pearls of wisdom in a fashion that only our dear Marshall Vic can give. These are just priceless and good 'ole Marshall Vic always comes through when things are tough here at Houston Central. These episodes just make us laugh so much...they are such great medicine when times are dark. Thank you MV for brightening our days with your wisdom and down home remedies. VP's ya just gotta love the Marshall.

So it's almost the end of week 6 of radiation. You're right Marshall...we CAN see the light at the end of this tunnel. In fact we've even set a potential date to come home...but more about that in a minute.

Here's the medical bullet for the week. There's no doubt about it...this much radiation is not for sissies or wimps. The good news is that the tumors have and are reacting just like they were supposed to...they are dying or are dead!!! We won't know for sure until the scans are done but, no way could any nasty cancer cell live through this. They are literally frying our gal alive...her neck is purple, blistered, weeping, and itching. We got some new prescription cream to put on all that and it seems to be working nicely. The biggest issue we are working on is the pain in Bren's throat, nose, and mouth. We got the approval from Dr. Schwartz to up the pain medication tomorrow. Although we won't be able to totally eliminate the pain, we are trying to get it reduced so she can sleep better and continue to drink water. She needs to keep her swallowing function.

We also saw the eye doctor yesterday who did a very thorough assessment of her eyes...long term, that's still a big issue with all that radiation to her face. The side effects can crop us years after the radiation is completed so it's something we'll really have to watch. The doctor said Bren's eyes were very healthy and the excessive tearing was just a side effect of the radiation. The tissue around her eyes is very swollen and raw, and some of the tear glands might be blocked bu the swelling so the doc gave her some antibiotic-steroid eye drops to use to see if we can get the swelling down. I really don't know what we would do without all this medication. That's just one more med to add to my chart. OCD is a good thing when you have all this medication to keep track of!!

So when we went to see Mary (Dr. Hongs PA) on Monday, we began talking about when we could go home. HOME!!!!! And we continued that talk with the radiation team this afternoon. Radiation will end on August 10th!!! That's just around the corner. Bren and I talked and decided it would be a good idea to stick around here for 10 days to 2 weeks because radiation is still working for about 2 weeks AFTER the actual treatments stop. The thing we still don't know about right now is if Brenda will have to go through any more chemo. We see Dr. Hong on Monday and that question should be answered then. PLEASE keep your fingers crossed he says NO!! A dear friend has offered to come to Houston to drive our car home so Brenda and I can fly home together and I can keep up with my nursing duties on our home turf.

So here's the news VP's...the most exciting...most happy making...almost the best medicine ever. We're shooting for Friday August 21st to go HOME!!!!! We are on cloud nine! I don't know when I've seen Brenda with so much energy considering the condition she's in physically. She is one happy camper...well actually...that makes 2 of us! This isn't cast in concrete yet but we should have a much better idea if this is doable on Monday. Double keep your fingers crossed. August 21st...we actually have a date in mind!!! It's just music to our ears. I'm going to start packing this weekend!!!

So please celebrate our almost home-going with us. Go out and toast to life, look around your home and the dear folks that mean so much to you and who enrich your life and thank them for all they bring to you. Give your animals an extra biscuit and take them for a nice walk (unless you live in Houston or Phoenix and it's too stinkin hot!) And most of all...pray for a cure for this horrible disease.

Do enjoy our fabulous Marshall Vic and our news. Hugs to you all...
Nurse Dee and a very fried, but focused on HOME, Chemo-sabe

Monday Update

Hi VP's...Time for another update. The most important thing to report is that the feeding tube is still holding in the correct position so we can get meds and formula into Chemo-sabe. Thanks the heavens!! We're almost at the correct calorie intake per day. Because of naps, and appointments, we've seemed to be one can sigh of our goal each day, but I think we'll make it today. You're probably asking...has poor Chemo-sabe lost weight? The answer is yes, but not at an alarming rate. We've seemed to have lost the most ground in that area while we struggled with this tube. Please tube...keep working!!!

We're at a milestone with today's radiation treatment...only 10 more days of treatments left!!! Yep! We can see the light at the end of the tunnel. We have 2 issues that we are working to minimize...The biggest is the pain. She describes the pain in her throat like swallowing broken glass. Add to that a dry, constructed throat, and you have a big painful problem. We upped her pain medication last Friday to a pain patch and after discussing this issues with Mary, Dr. Hong's PA...we're going to up it again tonight. This will only get worse as we work through these next 2 weeks so it's important to keep the pain managed. Mary is also going to try to get us into the pain clinic as soon as possible to help us manage this.

The other issue are the radiation burns on Chemo-sabe's neck...they are now starting to blister and weep and itch like crazy. This afternoon we got some gel strips that are used to soothe these burns on radiation patients. They are somewhat soothing to her, but the itch is still maddening. I think I'll get some aloe and work with that as well. You have to be careful what you use these on the burns. These next several weeks will be tricky. Even after the radiation treatments end, the radiation is still working so we probably will have to deal with these symptoms for about a month. The proper amount of pain meds are critical to keeping her comfortable. This radiation stiff is definitely the hardest part of the road to the CURE.

Brenda doesn't sleep well at night at all because she can't breathe well and her mouth dries out so quickly. Consequently she sleeps lots during the day...that's OK...it makes the time go fast. I'm being very careful NOT to overdose her on the pain meds so I'm watching her like a hawk. My motto...let her sleep!!

We saw Mary this afternoon...Dr. Hong is on a Disney Cruise with his grand kids, but will be back next week. I think I told you this but next Tuesday we start DOUBLE radiation treatments each day for 4 days. Dr. Schwartz said these were booster radiation treatments to the lower lymph nodes in Bren's lower neck and collar bone area. That heaven it's only 4 treatments and he said that these would not add more misery to the equation. The good news is that Mary said they would not do chemo while she was having these double treatments. The question remains...will she have to go through another round of chemo when the radiation is over?

We also asked about what would come next and when they would scan. Of course this is all up to the main man, Dr. Hong, but we think that they will tell us to take Brenda home to heal after the radiation and/or chemo is over and to come back in 6 to 8 weeks for the scans. The reason they do that is because all the tissue around the tumor sites are so inflamed that they just wouldn't get good scans on any remaining cancer cells until all that calmed down. That made perfect sense to us. Right now I'm thinking that we'll have to stay here for about 2 weeks when all the treatments are over so we can be close to MD Anderson who will help us manage the side effects until things begin to calm down and she's strong enough to fly home...she's pretty weak right now. You know, if our angels continue to remain with us we might be able to be home by the end of August...now that's MUSIC to our ears!!! The light is getting brighter.

I thought I'd send you a picture of our kitchen pharmacy...most of these are for poor Chemo-sabe. I've got quite the system worked out and yes!!! I have more CHARTS! The red machine in the middle is my wonderful Kuerig Coffee Maker...that's MY drug! Ha! The second picture is our girl just trying to get through the day...closer to the end and the CURE. I'm not trying to strangle her...the white gauze is to keep the cooling gel packs on her neck. It is what it is! BUT we're closer to the end then we were yesterday! Thank the Lord!

So there ya have it VP's...the food is dripping and "Garbage Girl" is trying to eat up the food in the freezer, frig, and the cupboards so we don't waste stuff. Thank heaven I'm not a picky eater. Please continue your contact, prayers, and good thoughts as we work through these last hard days. You all really make a difference.

Hugs to you all from Houston Central...
Nurse Dee and a very burned and pain filled Chemo-sabe

Rattling the Cages at MD Anderson

VP's...now 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 did...in 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 minutes...now 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 cure...it has certainly not been without BUMPS!!

Nurse Dee and puny Chemo-sabe