Tuesday, June 30, 2009
Morning VP's...I think it was all your collective minds that woke me up this morning yelling..."WE WANT AN UPDATE, NURSE DEE!!!" OK, OK, OK! So here's the scoop for Tuesday morning.
Well, it was a hell of a week last week and it really took us until Sunday to recover. Sunday Brenda and I were just tired of looking at this apartment's wall and she wanted to get out a little...if nothing else, just to have me drive her around. She has just been so exhausted that the thought of trying to sit up for any amount of time in the car was just too much. But she also knew that it was important to try and get up and walk around to get some exercise. Considering how hot and humid it is outside...we headed to one of our favorite Houston locations...the big air conditioned Galleria. We walked and did a little shopping, but as you can imagine, in no time she was really pooped and I needed to get her back to the couch.
So I got Chemo-sabe back to the apartment and tucked her in with her pillows and blanket on the couch. I took off for the grocery store to pick up some supplies and a movie for our evening enjoyment. We rented "Henry Pool Is Here." It's a really good movie about "believing" and "miracles." We really are trying to tap into all that so the movie was really a good one for us. Rent it. You might enjoy it.
Yesterday we were back in the "clinic" mode. Bren had an audiologist appointment at 9:00 am so we had to get up and out much earlier than we do usually. Dr. Hall (the audiologist) was a really, really great guy. We had a nice time talking to him. He was really friendly, funny, talkative, and very informative. Because of the Cisplatin (the harshest of the chemo drugs) Brenda's hearing is being permanently affected. Right now it's in the high frequency ranges, but there is a definite change. We might both be visiting the hearing aid store sooner rather than later!! Most of you know my hearing is going too...we're already asking each other what folks said!! We're quite the pair!! Ha! No one likes loosing any of their senses but that's why God helped brilliant minds create things like hearing aids.
We did have a food emergency on our way back from the clinic after that appointment. Brenda really struggled with her radiation appointment on Friday for a lot of reasons...discomfort, dry mouth, lack of focus to deal with the treatment, med routine off, exhaustion. You really do need the weekend to try and recover. All weekend her system was just "off" and we just couldn't get it under control before Monday. She didn't sleep well at all Sunday night and got up around 5:30 am Monday. She had a bowl of cereal in the morning but it didn't stay with her and by 10:30 am she started getting a stomach ache and shaky. By the time we got home she was in total food, bad stomach, overload. We got into the apartment and immediately got her an EAS Protein drink to help. This was not good at all and just sort of put her over the edge. The good thing was that she got to rest and recover until we had to go back to the clinic for the radiation treatment at 6:30 pm.
Thank heaven, her XRT (radiation treatment) went OK and she didn't experience the problems she had on Friday. You might think, "How difficult could it be to lie on a table while they treat you?" But remember that her head is back, her already dry mouth is forced open by the mouth stent for the entire duration of the treatment (usually 20 minutes) and the thing is almost gagging her without everything else that goes on. Then her arms are strapped down and a big mesh mask is put on her face and bolted to the table. Frankly to me it sounds more like the Inquisition than a treatment thats supposed to help and heal you. YIKES!!! It takes a lot of focus to get through each treatment. I think you get the picture.
So I figured out a system that we can keep Brenda's very delicate system under some sort of control. We talked about her need to eat some small amount of food every 2 to 3 hours. Since she's not eating the volume of food she did before, it was important to get small amounts of protein and calories in sooner rather than later. Than I put together an"emergency backpack" that we can take with us everywhere...especially the clinic where we're usually held hostage for HOURS. So the pack has water, crackers, energy bars, sugar-free gum and mints, her rinses and anything else we can think of. The is constantly changing and so we're really getting good at adapting.
That brings us to today. Bren got a good nights sleep and that makes all the difference in the world. I think all the VP's can relate to that. We got a bowl of cereal with some peaches in her tummy and she's feeling much better today. These are the ups and downs of cancer CURE treatments. Thank the Lord, we only have one appointment today...and that's XRT (radiation) at 1:45 PM. So we'll eat lunch and I'll call ahead to see if their treatment schedule is on time or not. Doing that really cuts our having to wait around. We have another movie to watch..."Bedtime Stories"...so hopefully it'll be an easier day. Tomorrow is going to be a nightmare...way too many appointments that we'll try and adjust.
Tomorrow night Doc Vic arrives and on Thursday, I head back to Phoenix for my union break. Vic will fly home on July 6th and our dear friend Toni will fly in and take over nursing duties until I get back on July 11th. Brenda said that I couldn't have any more union breaks until we were ready to head home TOGETHER with the CURE!! That's just absolutely fine with me. I want to take us home in the worst way but only when she is CURED. AMEN!!
Brenda's over there playing Scrabble on the computer...watch out Vic and Rhonda, the girl continues to practice daily. I think I'll head over to the gym and work out before my soap comes on!!! HA!! STOP LAUGHING ALL OF YOU!!! We hope that your day is wonderful. We send good tidings and blessings to each of you. Thanks for hanging with us through this LOOOOOONNNNNNNNNNGGGGGGGGGG journey! Write on the blog and let us know what you all are up to.
Hugs all around...
Nurse Dee and Scrabble Queen Chemo-sabe
Saturday, June 27, 2009
A Laughing Nurse Dee and Chemo-Sabe
Friday, June 26, 2009
Morning Everyone...Man! We had another long, long, long, long day yesterday. What make it more difficult is that Brenda is so fatigued. It was the first day after chemo and over the next several days she will be at her lowest as far as energy and resistance to germs are concerned. She's up for an hour or 2 and then has to take a nap. The good thing is that she's not in any major pain, she did mention, however, that she was beginning to have a sore throat, and her saliva is thicker, her mouth is dryer, and her skin feels a little sunburned...that's what we expected...they are really giving her high doses of radiation. The good news is that she has nothing else to do but recover and heal. We are so very thankful for everyone and everything that has led us to MD Anderson and will lead us through this journey to the CURE.
OK, so here's how yesterday went...just put yourself into this picture when you are so tired you can hardly stand up. We began with a 10:00 appointment with Dr. Hong. So like good patients and their nurses, we showed up early to ensure we didn't back up an already loaded health care-system. Maybe that's our first problem! Michele...this next part is going to drive you out of your mind...we waited...and waited...and waited...and then we waited some more. The chairs are lousy...no recliners...Brenda just wanted to lie down and I can't sit in those crummy chairs for a long time because I have a bad back. We weren't having any fun at all!!! So finally after an hour and a half, we asked where we were in Dr. Hong's schedule. Guess what...the intake folks at the desk forgot to mark us that we had arrived!!!! GRRRRRRRRRRR!!!! I wanted to Taser someone but I'm trying to be a good nurse and it's hard to continue your nursing duties behind bars at the county jail!!! The appointment with Dr. Hong took 5 minutes since Brenda is OK symptom wise right now. We talked to Mary and Thelma about trying to condense the waiting and spreading out the appointments so Brenda can get a good nap in. Bren had to get a Nulasta shot yesterday but we worked out a system that she didn't have to wait for an hour for the dang thing...that's what we're talking about!! I also suggested to Mary that we schedule Brenda's blood test a day BEFORE her first chemo day so we didn't have to make that first day any longer than it already was. You know...I just don't see how folks can go through this alone.
So we got to go back to the apartment and Bren dove for the couch...she was in zzzzzz-land before her head hit the pillow! We just had enough time to eat and then have her nap a little more before we headed back to the clinic for the Nulasta shot and radiation treatment. Now you might think that should be fairly easy and if you think on a small scale that might be true...but this place is HUGE and things are spread out all over the place. So sometimes to maximize Brenda's energy we go in 2 different directions to save her evergy. Today she went to the 10th floor pharmacy to pickjup the Nulasta shot while I went to the 1st floor to drop off our "patient supply" request form. We then met on the 9th floor where Thelma gave her the shot. From there we headed down to the basement for her radiation treatment. On the way to radiation we stopped at the 2nd floor pharmacy to pick up more heparin flush syringes that we had ordered. Off to radiation...
Yep....you guessed it...they were running LATE!!! Lord help us! I think they got a huge discount on those horrible chairs they have all over the place...they're in the radiation department as well! So there we sat for another hour waiting to get in for her treatment. So I used that time to go back to patient services to get the PICC line Heparin caps that we ordered. Guess what....they couldn't find the order that I had dropped off an hour before! It just was a trule disjointed day for everyone...we were falling through the cracks everywhere. You know this is really unusual for this place as large as it is. They truly do an amazing job when you think that they are treating 4,000 patients a day.
We finally got home around 5:45 PM. Man! What a week this has been. Whew!!! Today is a piece of cake...we only have Bren's radiation appointment and that's at 2:30 PM. Emily said we could call ahead and see if they were running on time to try and reduce the wait time. We only live about 15 minutes from the clinic and they have free valet parking for the radiation patients right at the radiation center so that really, really, helps with time and expense.
We spent the evening staring at the TV. I rented the movie "Inkheart" and we just let it watch us. Yep...Brenda napped...I watched. I just didn't have the umph to blog.
On a more energetic note...some of you VP's ...Rhonda, Koko, Michele & Karen, Karen M, Jodie & Donna, Bonnie P, Vicky & Callie, Paulette, Bonnie & Carter, Cathie & Evelyn REALLY want a blow-out CURE party, don't ya?. Hell...I can't blame you at all...we do too! Brenda hit the mother-lode of cards yesterday and MAN!!!... just about all of them had $5.00 in them to play the Mega Million Lottery! WOW!!! How cool is that. We just laughed and I wondered where the nearest store was that I could use this win-fall to get some tickets. You all are just wonderful for helping us have so may dreams of the future. We decided to spread the load out a bit to keep the excitement going and we'll buy some each week. You are so very wonderful of doing all this. We truly have the best village going! Kisses all over your face...if that's too personal...how about a big hug! Koko and Michelle...we didn't win with the tickets you sent...but we'll keep trying. This will be fun!
I think that about covers it for today...have a wonderful Friday. I know some of you are on vacation or are just beginning your trips. Take us along in your hearts while you're enjoying all the great places you're visiting. We'll be enjoying them right there with you. Send us some pictures and we'll post some of them on the blog. I don't see why the village can't come along!
Nurse Dee and Pooped, Napping Chemo-sabe
Wednesday, June 24, 2009
Hi VP's...another long day has ended and Round 1 of this chemo cycle is forked and DONE!!! Can you all scream YEAAAAAAAAAAA!!! We got our gal all set up in a tad bigger room in the chair unit this morning around 8:30am and I went to get my second morning cup of coffee at the Starbucks they have in the hospital and off to the CURE she went. Hey Vicky...I also had a cup of "Jet Fuel" that you sent...it's REALLY good. It's strong enough to curl your socks and I LOVE it. Thanks ever so much for thinging of me and my bold coffee addiction!! A girl's gotta do what a girl's gotta do to get our Bren through this!! I dare you to have a cup without out your hald and half!!! Ha!
Anyway...Brenda did some adjusting of her meds to help minimize the side effects of the chemo...and she took a great nap this morning. She really works hard to find the right combination that will give her comfort from the effects of all the drugs they give her on these chemo days. I'm so glad she can sleep and does a lot of that. It helps with the symptom control, gives her small bursts of energy, and helps her keep her wonderful, tenacious attitude. She is soooooo my hero.
We got out of the bed unit around 1:30 PM and headed over to the Radiation Treatment Center and met with a whole flock of folks that are part of Brenda's care team for radiation. We saw Dr. Swartzs' nurse Jennifer, his PA (oops...I can't remember her name!), the dietician Denise, and Tracey from the Behavioral Studies Department that asked us if we would consider joining a study about how couples communicate to each other through their cancer journey. Don't laugh...we agreed to subject the staff to our unique style of communication. On a serious note, they have done so much for us, we just wanted to give back. Michele...I know you must have a comment about this one. I can tell you this...this team is really going to be on top of any symptoms that crop up. Dr. Swartz really didn't have much of anything to look at or report so off we went. He did want Brenda to have an eye exam ASAP so they have a baseline on her vision. They are dangerous close to the lower orbit of her right eye and they have to radiate right between her eyes to target the brain lesion. We certainly want to keep her vision and other vital organs intact so help us with the shielding visualization if you feel so inclined. The more the better. The lady that checks us in at the front desk said that the radiation folks would fit us in so we wouldn't have to make another trip back tonight so we jumped for joy and headed for the treatment rooms and the waiting area.
Well, that didn't work out because they got backed up again so we had to come back at 7:00 PM. Bren went back for her treatment at 7:15 and she was out by 7:40...not bad. At least it gave us the opportunity to go back to the apartment and have her take another one of those "Power Naps." They are truly good for all that ails you.
I asked her what the treatment was like and maybe some of you are curious as well...OK so the medical folks know all about this, but those of us that don't like the sight of blood but are fascinated by the Discovery Health channel might be interested. Here's how she described it. She has to take her shirt and bra off and she covers "the girls" with a towel, then she lies on the table, and they have her put the mouth stent in and put on these wrist bands that pull her shoulders down toward her feet that help to keep her still. Then they put the mesh mask on and they make sure that she is all lined up properly. Then off the technician goes to run the computer program. Since Brenda's eyes are closed, all she can see/sense are different intensities of lights coming at different directions and, in some instances, the table actually moves so the beam can hit its target better. The technology is truly amazing. Day 2 of radiation = HISTORY!!
We're home now watching the championship game of the 2009 College World Series and it sure looks like Lousiana State University is going to beat the Texas Longhorns who were the reigning champs. We've been watching the games all week and they have been really good. LSU is leading 9 to 4 in the top of the 7th inning. At least tomorrow we don't have to get up at 6:15 am. UGH!
Tomorrow we have to see Dr. Hong at 10:00, get Brenda her white blood count building Nulasta shot after that and then be in radiation at 4:15 PM. Tomorrow is also the day I have to change her PICC line dressing, change the PICC line cap, and give her her daily Heparin flush so the line doesn't clog. A nurses duties are never done.
So now on to the slot competition. Thanks Bonnie for ensuring that we have RULES to follow...being a cop for 30 years, I've had rules out my eyeballs, but I truly understand that some of the villagers exhibit true competitive personalities that need the playing field to be defined out of fairness and good sportsmanship. So is everyone on the same sheet of music? How about we take Bonnie's suggestion and report the results in the blog every Sunday night by 8:00 PM Houston time. I just checked with Queen Triple 7 Slots of Buffalo Speedway and she's at $3862.75. It's 9:10 PM Houston time. Touch Away!!!
So that about wraps it up for Wednesday night in Houston...a VERY HOT and HUMID Houston I might add! Being from Arizona, Bren and I don't much mind the heat out there because it's a dry heat. Yes...it still is like putting your head into an oven but it's not like walking into a steam room like it is here. It really does feel so much hotter here. If you can beloieve this, they had the chemo room so cold this morning that I had to put on my fleece jacket!!! The hotter it is outside, the colder they make the building!!!
Hey Bonnie and Jackie...I got a voice mail from Vickie Shaw this afternoon. How absolutely wonderful. I didn't have a chance to call her back but will try and do that tomorrow or Friday at the very latest. It really was so very nice of you to mention our situation to her and for her to call. We're really looking forward to seeing them. I know she'll have us laughing our socks off in no time. I just listened to her talk on the phone with that southern twang and I was smiling. How cool!
The pictures are of our Rip Van Amburg through the years. The top picture is of our sleepy Chemo-sabe taking a quick Power Nap on the banks of the Little Colorado River while we were on a 7 day trip down the Colorado River through the Grand Canyon. That training has really come in handly to prepare her for these long days. The bottom pic was taken this morning. Being plugged into he iTouch has been a God-send. Catching Power Naps when you can is vital. I can remember taking a wonderful Power Nap in a cemertry over my lunch break when I had to work midnights as a Patrol Sergeant. I had such a miserable time staying awake all night. UGH. Sure glad I don't have to do that any more.
OK...so I have jabbered on long enough for tonight. Thanks for all you do to help us stay UP! You're the best village Chemo-sabe and her nurse could ask for.
Sleep well...good dreams...
Nirse Dee and Chemo Van Winkle
Tuesday, June 23, 2009
So today was another LONG one but we got a break in the middle. We ended up squashed in what I think was the smallest chemo treatment room they have at MD Anderson. Now those of you that know us, know that we are "gear girls" so it was quite challenging for me to get all our stuff organized in that tiny room. Maybe I should look at this like an MD Anderson compliment that we are small women so we could fit nicely in a small room...yea! That's it! Ha!
They got Brenda's chemo going. It's a 5 hour treatment today. We actually got out about 1:30 PM and we went and had some Meditterean food at a place called Skewers...not bad. It was fun to eat some place besides the hospital. So after that we went home and I absolutely crashed out on the bed for 3 hours. I think I'd still be there but I had to get up to get Bren to her first real radiation treatment. Since Bren had such a good nap during chemo...like a good 2+ hours, she played her slots on the iTouch (more on that later Michele), talked with a friend, read her e-mail and took another shorter nap before we went for the evening appointment.
OK so we motor over to the Radiation Treatment Center for our 6:30 PM appointment. Mind you, this is only supposed to take an hour tops. Well, something on the machine wasn't quite right for the guy in front of us so they had to fix that which caused us to wait an hour before they got her in for the actual treatment. There's a tremendous amount of waiting in this journey. We're both trying to put it to good use. Brenda is very competitive and is determined to beat Michele in Slots. I'm catching up on some reading. So we got out of the treatment center about 8:15 PM and Brenda wanted to treat herself to an ice cream bar so we drove to the grocery store for a box of Eskimo Pies!!! YUM!
She said the treatment wasn't bad, but this is only day 2. Her eyes were closed, the mouth stent was in, the face mask was on and she's strapped down so she doesn't move. She said she could see lights through her closed eyes moving around and could sense the machine was changing it's beam to radiate the different areas that need to be zapped. We're both visualizing "shields" around the critical areas that need protection and exposure to all the cancer cells. We'd love if you'd help us visualize that for her as well.
Brenda went through the "Daily Self-Care" chart I made this morning and did the rinses and fluoride treatment that she has to do before going to bed. You might laugh and say...Man! That Nurse Dee is really taking her nursing duties to a new OCD level. HA! That's true, but if you saw how many things Brenda has to do DAILY...multiple times daily I might add...I think you'd make some type of chart too. It's amazing!!! And most of these she will have to do the rest of her life so the faster we develop the habits, the better. Thank heaven she is such a complient patient...God Love Her. This really could be a nightmare with some stubborn folks!
So now let's talk SLOTS!!! Brenda started yesterday with $2000.00. She was at about $1200 last night at the check-in time. Since Michele said she hit the big 7's, Michele might have won last night's round but I'm still waiting to hear how she did. Michele, Jodie, and Jackie, I have to warn you that before Bren went to sleep last night, she hit the big triple 7's betting the max amount which added up to 10,000 credits. It's 10:15 PM and she's at $4012.25. How's everyone else doing?
Tomorrow will be a little longer than today because after chemo we have to see the radiation doc at 2:30. Then we get to come home and then back for radiation at 6:30 PM...that time really messes up dinner!! Oh Well! It is what it is!
Sleep tight everyone...more tomorrow.
Nurse Dee and Chemo-sabe.
Monday, June 22, 2009
We had an 8:00 am appointment for chemo this morning but in true, ever changing fashion, poor Bren needed to have a blood test before they started to ensure her white blood count was where it should be. You can't even believe how many people were in that lab area waiting to get tests done...it was the worst I have EVER seen it. Well that put us behind an hour+. So when you factor in all the time it takes for the fluids, additional meds, chemo and more flushes, we estimate she might be through by 5:00 pm. That's already a long day, but it's not over yet.
Of course she had a dental appointment at 2:30 but that's now impossible to make. She HAS to get her mouth stent for radiation tonight so I'm going to her dental appointment as her stand-in! Some lady this morning told us that we looked alike! REALLY??? I know we've been together for 23 years, and that we oftern say the same thing at the same time, but looking alike? I think not! So I guess I'll just use that and be Brenda Van Amburg today. Frankly, I wish I could share some of these physical treatments with her so she wouldn't have to feel so bad. I certainly NOT wishing for cancer...NOT, NOT, NOT!!! Pain shared is pain divided! Anyway...I'm just going up there to get all the "stuff" (medical term) and learn how to use the mouth guard and fluoride treatments. That way we can stay on track.
OK...so we still don't get to go home. After chemo we have to go over to the Radiation Treatment Center for the radiation "dry run." That's when all the equipment is placed in exactly the same manner to ensure Bren is positioned and the machine is calibrated for all the future treatments. That appointment is at 6:45 PM but they said they would try to work us in so I'll call later this afternoon with an update on when we end chemo so they'll be more prepared to really do that. THEN we get to go home!!!! We made homemade chicken soup this weekend so we're all prepared with dinner. Frankly, I'm hungry right now and would love a bowl of that.
Although Brenda is grabbing a nap right now, she has also been burning up her iTouch playing the slots. Michele...let the games begin. How about everyone that's actually playing report their earnings or losses at 8:00 PM tonight, Houston time. Just post your results...OK? That way we can keep track how everyone's doing. VP's you still have time to borrow an iPhone or iTouch (good job Jodie) or go buy one...come on, I know you need some excuse to get that new gizmo!! Ha!
Nurse Dee and a Napping Chemo-sabe
Sunday, June 21, 2009
VP's...We're mentally and physically preparing for the beginning of Stage 2 tomorrow morning. It's going to be a very busy day. Brenda will begin her first round of chemo at 8:00 am...for 7 hours!!! Then we go to a dental appointment after that to ensure the permanent stent for radiation works fine in her mouth and to pick us the mouth trays for her fluoride treatments that she'll have to use daily for the rest of her life. After that we go to the Radiation Treatment Center for the "dry run" to ensure everything is all set and lined up properly for the beginning of the actual radiation treatments which will begin on Tuesday. On top of all this we have to begin all the additional home self-care regiments that will help her through this next Stage.
Some of you that know me really well know that I tend to be a little OCD at times and LOVE to organize just about everything in Brenda's and my life together. Stop laughing you guys!! I HAVE to do this or I go nuts!!! Ha! Anyway, I have created a notebook with charts, calendars, useful information we can quickly refer to, and forms that will keep track of food and fluid intake, symptoms, pain levels, food and liquid elimination...well you get the idea. Karen...it would make you proud.
So now you ask...why on earth are you telling me all this! Well if you've read the comments from Michele on the blog...she has just challenged Brenda to a "Slot Comepetition." So I just thought I'd help ORGANIZE that a little and also send out the challenge to all the other VP's that would care to play. I guess the only problem is that you have to have an iPhone or and iTouch to be able to play. So if you're looking for an excuse to get one of those really great devices...now is your chance.
So...to make this fair and exciting...all the players have to use the same game. We just downloaded "Vegas Slots" into Brenda's iTouch. The game cost $3.99 but I think most of you could afford that. For those of you that have to go out and buy the device itself...the cost of the game just might put you over the edge...hell just give up your daily Starbucks' run and you're good to go. She's using the one-line, double jackpot game.
How about if we start at 8:00 AM, Houston time, for the actually beginning of the tournamnet? It's the time Stage 2 will start. If you're playing with the game today, you can just cash-out and start a-new tomorrow morning. You can report your winnings on the blog so we can all see how you're doing. We can end the game on August 10th which is Brenda's LAST radiation treatment.
So how does this sound? The Mac stores are open today and you still have time...and now an excuse...to go buy one of these really cool devices. Have I missed any details? Michele? Are you good to go? I know you got your new phone and we have downloaded and installed the new operating system on Brenda's iTouch so we're good to go.
Let the slots begin!!!
Nurse Dee...Pit Boss for Casino Chemo-sabe
Friday, June 19, 2009
Michele's visit was like an IV of "Happy, Encouraging, Witty, Hyper, Determined, Scholarly, 'Really' Juice." It was sandwiched between 2 horrible clinic days and really did a lot to temper how brain-fried both Brenda and I were after those doctor visits. If we could just bottle some of this juice Michele produces, we could all retire and live happily ever after on a beautiful Tahitian island. Having dinner with Koko just helped bring back some of the sun and fun we all had on our last 2 Olivia Cruises to Barbados and Tahiti. Skyping with Karen and Michele and the Aussies just helped us sooooo very much fell closer to you all. Seeing you and being able to see your expressions is priceless. We laughed till our sides hurt. Really Karen...technology & your new MAC are fantastic...don't be afraid...walk to the light!!! Ha!
OK...OK...I'll get to what we learned yesterday from the main guy...Dr. Hong. The chemo regime is a little different than what Mary first told us. Things are CONSTANTLY changing!! It's the norm and really frustrating, but Bren and I learned a long time ago to move with things and not get too hung up when paths changed...everything always worked out and most of the time it was for the better. Instead of chemo once a week, like we thought, chemo infusion will be on the same schedule, with the same drugs, as Stage 1 only at a lower dose. So she'll have another 3 rounds of chemo. Each round is on a 21 day cycle with the first 3 days of each cycle as infusion days where she actually gets the drugs. The other 18 days the drugs just work through her system. Needless to say, it's going to be a VERY busy time going back and forth to the clinic for infusion, radiation, office visits because both Dr. Hong and Dr. Schwartz want to see her weekly. Then I'm sure there will be Nulasta shots, blood draws, educational clinics and heaven knows what also inserted in there. Pray for us a lot...PLEASE!!
We tried to pin Dr. Hong down on several issues, but he's just taking a very conservative approach when discussing outcomes and side effects with us. In retrospect, I think that's all he can do safely. He said that Brenda's tumor's presented some significant challenges and that her cancer was quite advanced when we arrived. That is why they are hitting this so hard...every one is after the CURE!! He said that...we are in the CURATIVE mode. He said that is the main mission right now and even with all the scans and knowing Brenda's case so well...he still feels that her cancer is "POTENTIALLY CURABLE." He said that he will worry about long term side effects AFTER the CURE! He said there was no other approach to take right now. He's wants to take the less invasive route to see if they can kill the cancer...especially the small lesion in her brain, and avoid having to do that cranial surgery. We totally get that part. He felt all around Brenda's neck and said that the treatments were affecting the tumors "satisfactorily." It's just one day at a time and we HAVE to be patient with that. It's a very slow process, but we're ALL working toward the CURE!!!!
We haven't gotten the chemo schedule yet but I can envision that most likely starting next week along with radiation. I'm thinking we should hear from Mary today or see that on the MD Anderson scheduler. While Brenda is feeling so well, we're going to try and get out and have some fun and eat some good meals. We're both still pretty exhausted right now so we'll be trying to recharge our batteries in preparation for the days ahead.
To all of you who are hanging in there with us on this long walk...a thousand thanks from the bottom of my heart. Words just can't describe how comforting your efforts are to us. I can't imagine having to travel this path alone. Many do unfortunately. We see them wandering around the clinic and it's so very sad. We really do feel your presence and know that we can reach out for you when we need something specific and you'll be there even though hundreds of miles in some cases might separate us. I really don't know how we could do this without you. It DOES take a village to get through this.
So I need to get off my keester and go for a walk while it's still just warm outside instead of oppressively hot and humid. Brenda is napping and thats good...she needs to build up all the strength she can muster for the days ahead. She is such a brave and determined soul and will remain, forever, my hero.
Love and blessing to you all...
Nurse Dee and our favorite Chemo-sabe
Tuesday, June 16, 2009
So let me get to the Stage 2 / Part 1 medical “bullet.” Today’s visit to the clinic was to prepare us for what radiation therapy was all about. Because they truly believe an informed patient can better manage their physical and emotional response to this kind of treatment, we attended a mandatory class that really walked us through the steps to take care of yourself through the course of treatment and they explained the worse-case side effects of the treatment and how to handle these with their constant help. The good news is that Brenda is closely monitored by everyone involved in her treatment on a daily basis. They really want to stay on top of the side effects of the radiation. Since everyone responds differently, and the side effects depend on exactly what areas are radiated, they are not able to say how bad all this will get. There is no doubt however that this will be a rough stage. Remember that she’s will have more chemo so that brings on the side effects quicker.
Then all the radiation physicians came in and examined Brenda’s neck and sinus cavity. They had to put the scope into both sides of her sinus area but she handled it very well and it didn’t seem to be as bad as those early scopes she got. They projected it up on a big screen for everyone to see, but since the tumor had been removed, it looked like healthy pink tissue to me...I didn’t see any more gross aliens in there screaming to get out or cause more problems!! Then they went to a planning office and looked at the scans and what Dr. Swartz was proposing to treat and how.
After that Dr. Swartz and his intern came in and we talked in more detail about what areas they had to treat. The side effects were again discussed and we asked some questions. It’s quite evident that they were going for the complete elimination of all cancer cells that where still lurking in Brenda’s neck, sinus cavity, and that small lesion in her brain.
Stage 2 / Part 2 will begin on Thursday when we see Dr. Hong who will outline the chemo side of this Stage. Using chemo WITH radiation will be used to enhance the cancer destruction process. We’ll have to let you know what that will look like after that meeting. What we heard was chemo is going to be one day a week for the duration of the radiation treatments which will start on June 22nd and will end on August 10th. That’s 35 radiation treatments. The first day is not an actual treatment day but a dry run to ensure that all the parameters are correct.
So there you have it for today. This next stage will be very challenging and we continue to ask for your positive energy and prayers. The blog and your comments are just such a fantastic light that shines through the rough days we’ve had and the rough days ahead...but we know this will all eventually end with the CURE...Good as new!
Nurse Dee and a very Brave Chemo-sabe
Monday, June 15, 2009
Bonnie and Jackie added:
Let the dancing begin! In celebration of your efforts to get Stage 2 underway, we noticed that you've been practicing La Cucaracha behind the scenes. You have really embraced the southwestern lifestyle :-)!! Sorry that your heads are a bit out of proportion. After a million tries, it's the only way that it works! The link to the real movie takes a minute to download, but your moves are so special and the outfits so authentic...notice the creative costumes, as well as fabulous footwear.
We're still howling...actually this dance remind us of trying to get out of our apartment door with all the mosquitoes hanging around the outside looking for fresh blood. They won't eat Brenda because she's full of the new insect repellant...CHEMO! They're waiting for the Nurses!! YIKES.
Bonnie and Jackie...thanks for the hysterical good time your enties give us. They are priceless!
Nurse Dee and Chemo-sabe
Sunday, June 14, 2009
VP's...Good Morning one and all. Well it's been several days since we posted so we just thought it was time for an update especially after Michele's comments about Marshall Vic's "princess pumps," and the Marshall's quick response. Yes VP's we do have visual evidence from that Sonora Bay, Mexico trip that she spoke about.
But before we dive into that we'll just fill you in on the latest "Houston Health Haps." Friday Chemo-sabe went in to the Radiation Treatment Center where they did what's called the "simulation." They had her wear her mouth stint, which by the way she is tolerating beautifully (Thank the Lord!), and then they ran her through the CT scan to get pictures of her neck and head. After that they made the mess mask that will hold her head to the treatment table in exactly the right position and ran her through the CT Scan again. The whole process took about 30 to 40 minutes. Since Chemo-sabe usually sleeps with a pillow on her head, this mesh mask was no big deal. We are so relieved that this is not going to be a claustrophobic nightmare. We also got to talk to Dr. Swartz who is the Radiation Oncologist in charge, but we'll save his comments until after Tuesday's "Planning Session." That's when he'll know a whole lot more as they actually look at the scans they did and map out where and how they are going to target the radiation. Please pump up the prayer machines as we go into this next phase. He said this was a difficult case but he's treated worse with success. We really, really need the divine intervention that we've already seen to continue. IT'S WORKING!!!! So look for more medical "bullets" this coming week.
So now on to the story. Michele, Karen, Cal, Vic, Brenda and I all took an Olivia Vacation together to a Club Med in Sonora Bay, Mexico in October of 2000. None of us are "fashion girls" except for our Cal who can "doll up" with the best of em! She does the whole hair, make-up routine almost daily. Well she was a top gas company executive "in the day" and can still carry off that fashion look like nobody's business. Hell...I was an executive at the police department and the only fashion statement I seemed to be able to carry off was chapstick, handcuffs and a gun!!!
So here we are in Mexico waiting for the evening entertainment and Cal takes a look at all of us and decides we really need fashion help in the worst way which equates to re-moussed hair and make-up. Now Cal is a strong, persuasive gal that you just DON'T say NO to. Of course we encouraged her when WE weren't sitting in the stylist chair, but we all ended up getting the TREATMENT!!! You would have thought Cal was trying to poison us through make-up!!! It was hysterical. Can you hear Brenda laughing and saying "NOOOOOOOOO...PLEEEEEEEEASE!!? We decided it was all Michele's fault that we ended up looking like her "Stable of Ladies!"
Lucky for all the bloggers that I was able to locate these archival photos of our dear "Madam Michelle" and her ladies of the evening. Just like Chemo Sabe, Michelle has many hidden talents. As you can see, one of her "girls" was not the most
willing participant in the evening's activities!
Check out the visual evidence. It was just more to laugh about!!
We also had a wonderful time on Friday night with Lynn and Kim from home who came out to visit Vera, Cheryl, Becky and Kim who live here in Houston. They met them when we all had a soaking wet time in the Turks last October on another one of our Olivia vacations. Hopefully we'll be able to see them before they fly home this afternoon.
So check out the photos, and have a chuckle. Michele arrives in the Houston Hood tomorrow afternoon and we just can't wait. I'm going to surprise her...there's a Dunkin Donuts close to the apartment!!! You'd think that a real addict would have already done a google search on that and mapped the locations. I've got her beat...I have all the Starbucks located...I can smell em a mile away!! Just ask Chemo-sabe.
Happy Sunday to you all...
Nurse Dee and a napping Chemo-sabe
Thursday, June 11, 2009
So we got to the dentist at 9:15 for a 9:30 appointment and had to wait until 11:00 to get in for the fitting that took about 10 minutes! GRRRRRR! Hey! It's a really busy place trying to do right by all their patients...Brenda played slots on her iTouch...a lot of slots on her iTouch!!! (Thanks Amanda, Cate, Karen, Michele, Wendy, Kim and Cal and Vic...she's having a mindless ball with that new distraction...she loves it!!!It's the PERFECT thing for this type of waiting.) The stint fit fine after a few minor adjustments and the doc tried to alter it as much as possible to keep that nasty gag response down. With Brenda concentrating and trying to relax into this, the stint worked just like it was supposed to and she did NOT throw-up all over the doctor. YEA!!! Houston...we have lift-off!! I'm so happy that she can deal with this issue so successfully.
I have some more exciting news. Marshall Vic knew that there were many stages to this cancer journey to the CURE and so when she and her alter-ego, Doc Vic, were here in Houston, they all decided that some "retail therapy" was in order. The theory was that each stage of the CURE needed a new fashion look. Now this is a little hard for Brenda and I...we are T-shirt, levis, and shorts kind of gals, but Marshall/Doc Vic have many sides to their persona....this could get really interesting. Marshall Vic finally had time out of her busy day to model the new "Stage 2 - Radiated Chemo-Sabe" fashion look. Check out the video and you'll see what I mean.
Marshall Vic's effort to create a new fasion statement for every stage of the CURE has officially given Brenda and I the idea to post this as the NEW CONTEST for June and July. The official name for this new challenge to all the VP's that are brave enough to play is:
"STAGE 2 - RADIATED FASHION ALTERNATIVES FOR CHEMO-SABE"
This should begin to stur some creative juices...heck...the first thing I thought of was, "What can I do with aluminum foil and duct tape?!" Ha! Got some ideas?
Just check out this wonderful flick of our favorite Marshall...we're now waiting for some of your wonderful and very creative ideas for Brenda's new look or a new look for you to commemorate Stage 2.
Smiles to you all...stay cool...summer is almost here!
Nurse Dee and Chemo-sabe
Tuesday, June 9, 2009
VP's we just got word that the famous Doctor Kipling had heard about Brenda's rare cancer case being reviewed and CURED here at MD Anderson and he said to Dr. Hong that he would love to offer his assistance. He knew that his mere presence would offer comfort, protect Brenda from those evil and errant cancer cells, and was more than willing to make a showing at her bedside for consultation. Word has it that once he bonds with a patient he is a loyal and tenacious provider of wisdom, support, love and affection...not in an unethical sense mind you...but as a true devotee to the patient and the CURE.
We are soooo fortunate that Dr. Kipling has heard about our journey through cancer to the CURE and is more than willing to become a critical part of this tremendous team. Our guardian angels are sure charting our course!!
Amazing!! A thousand woofs!!
OK...I promise just a few more pics of celebration for Champion Sir Tanner from Ch Kippy up in Vegas...yep, you know Vegas...any excuse to have a party. What happens in Vegas, stays in Vegas!!! Thanks for the celebration gang!
The Pack Leader of the Taylor/Van Amburg Doberman Pack
Hey Everyone...This post is really for all the dog lovers in the crowd. My good friend Jordan who is a Doberman breeder, photographer and dog show enthusiast, sent us this picture of her "Champion" Haven congratulating the new "Champion" in the Taylor/Van Amburg family. Thanks Jordan and Haven..."you look absolutely wonderful darling!!!"
Monday, June 8, 2009
Hi VP's...well our waiting for news on Stage 2 is over and we just heard this afternoon what that stage of Brenda's journey to the cure will be. The docs that Brenda saw while Vic was here really led us to believe that surgery for the brain lesion, etc would be the next stage. Both Brenda and I have been trying to get our minds around that big stage. YIKES!!
Well folks...that's NOT going to happen right now. The next stage will be the combined chemo/radiation treatment. It looks like she'll have a lower dose chemo once a week and radiation 5 days a week for 7 weeks. They said they have seen very good results with the combined chemo/radiation therapy. That means they radiate while she's having chemo. So that puts us at around August 8th for the end of Stage 2. They staffed Brenda's case in a big medical conference at MD Anderson and everyone got to weigh in on their thoughts about what to do next. This was the concensus. We'll find out more of the details in the days ahead.
Tomorrow she has to go to the dentist who we think will make mouth splints for when they do radiation. Then on Friday we go into to the Radiation Treatment Center for what they call "Simulation." They'll make a mess mask of Brend's face that she will wear during radiation that will help the doc target the radiation. On Tuesday the 16th we have to go to a mandatory patient (and Nurse!) education class. Then we go back to the radiation center for another planning session. On the 18th we'll go see Dr. Hong and we can get our 100,000 questions answered. Inquiring minds want to know!!! On Monday the 22nd Stage 2 will actually start.
So now you know what we know. More as we march through this next stage. Brenda is doing great right now...her energy levels have improved a lot and we 've had daily outings to some local craft stores to get supplies for several things we're working on. We are calling our new effort, "Craft Hour at the Retirement Home!!" Got the visual? Brenda has also been able to explore some old time favorite meals...like steak at Outback, BBQ Chicken Salad at California Pizza Kitchen, Starbucks Iced Mocha's, Baby Back Ribs...actually she's been eating like a horse!! And that's a good thing with what's coming up in Stage 2. She's really such an amazing person.
Later this week our good buddies Kim and Lynn from Arizona are coming to visit some friends here in Houston. We are all going to try and get together so we're really looking forward to that. Then next week our hysterical one and only Michele is stopping off here on her way to and from Dallas...OK a little out of the way from New Jersey, but we're so glad she decided to come visit.
Hope all's well with each and every one of you...
Sunday, June 7, 2009
Anyway...Tanner was in a show in Flagstaff, AZ this weekend. My dear friend Gerry, who breeds Dobermans and is the breeder that I bought Abbie and Tanner from, is taking care of our 2 while we're in Houston. She has also been showing dogs for years. She took Tanner and 2 of her Dobermans up there for the show and passed Tanner off to our professional handler and friend, Sara Lopez who actually took Tanner into the ring. Believe me handling the dog correctly in the show ring is not an easy thing to do.
We just got a phone call from Gerry who reported on the results of todays show for Dobermans:
HE HAS FINALLY EARNED ALL 15 POINTS AND IS A NEW AKC CHAMPION!!!
This is a really BIG deal. We're on cloud 9...so go out today and help us celebrate! YEA TANNER!
Nurse (Woof) DD and Chemo-sabe
Saturday, June 6, 2009
Morning VP's...Little did you know that so many of our VP's have latent talent just waiting to come bubbling out. The latest version of the "Marshall Vic's Texas Chronicles" is a wonderful testament to this fact. Marshall...I have to say that I had a horrible time getting to sleep last night because of you! Every time I was just about to doze off, I run that clip through my head and end up laughing. It's a little known medical fact that you just can't go to sleep when your laughing!!! IMPOSSIBLE. I had to take an Ambien!!! We are all waiting for more episodes...it's not time to retire the badge!!
Anyway, a couple weeks ago, during a rather difficult time in Brenda's medical adventure, Bonnie and Jackie sent me another post that we thought would be good for a better time. So I've held it until NOW!!! Things are better and it's time for you to discover more of Brenda's many talents. I've lived with this woman for 23 years and it had taken Bonnie and Jackie and their spy camera to uncover more of Brenda's artistic side. I'm constantly amazed by our Chemo-sabe in SOOOOOOOO many ways!! Ha! Check out what Bonnie and Jackie have discovered:
With the 'Texas Has Talent' show up and running, Brenda is being highlighted as one of the top contenders for this coveted title. With her fiddlin' around days securely in the past, she's moved to the stable life of playing professionally and has been practicing for her premier production of The Yellow Rose of Texas. You will be amazed at what that girl has prepared for your lookin' and listenin' pleasure. If you have two browsers, the best way to view her performance is to have one browser with Brenda's fancy face showing and the other with a small rendition of the music link. This performance was recorded earlier so that the yellow rose from her garden could be featured. Be sure to call in your vote soon!
xoxo, Bonnie and Jackie
Check out the sound clip below. If it doesn't automatically link you just paste the link into your web browser.:
Friday, June 5, 2009
Hi VP's...No new medical bullets to report. We're waiting to hear what the next things are on the schedule, but so far everyone is still giving their 2 cents and the big guy...Dr. Hong...is finishing up listening to everyone and deciding what we should do next. We'll let you all know when we know. Until then, Amanda sent us some great material for the blog which has spurred me to use her idea as the jumping off point for our June contest. Yes folks...we're still playing. So the June contest is entitled "Let's Dream About the Future." To get your creative juices going and without further ado...here's Amanda's post. The numbered photos correspond to the comments below:
Well, I've been wanting to create a post for some time, so I thought I'd work on one for you all tonight. I got to thinking that a Chemo Sabe has to have something to keep her sights on. I know you went to see "Up" today, and I love that you had wonderful time. So I thought I'd send you something you could go "Down" on. (Michele, I know what your thinking.) But, I mean that in the cleanest way possible.
I'm thinking that for you to have some inspiring photos of our upcoming "CURE CELEBRATION '09" It might help you get through the rough times. You are one day closer, my sweet chemo sabe!!!
So the theme of this series of photos is "DOWN UNDER" --THE FUTURE TRIPS OF THE VPs!!! The FIRST of many trips to come will be the LOVELY PUERTO VALLARTA.......
So, Photo #1 is the first view of Puerto Vallarta. (My MEOS sista is drooling right this very moment, I know.) It's a lovely place with a spectacular pool, and we will all be together bobbing up and down (with our eyes pealed.....hoping NOT to see Blue Bonnet!!)
Photo #2, is another photo of this lovely place, with just a slightly different angle from our balcony. Nice huh?
Photo #3, is a picture of our Daughter Grace...who's showing you that for just a few of "these green thingy's.....you two can hang with your fav VPs in lovely PV!!
Photo #4 (she's gonna divorce me for this) is a Photo of Catie, (with her bad ass New York attitude on) saying "Whadda Hell....You ain't tinkin' a goin'?"
Photo #5 is an example photo of just a couple of sweet people you too could be giggling with until the wee hours, celebrating that this year is FINALLY BEHIND YOU!!!
Photo #6 is three tough Broads who are gonna mess you up, if you are thinking that Arizona is the only fun place to hang out!
Photo #7 is what Cate is going to do to me for putting these photos on the blog
Photo #8 is a lovely example of what our favorite Chemo Sabe is doing most of the time right now. (That's Lily the Chihuahua just FYI)
Photo #9 is what the Pod all looks like when we have to wait in line at the restaurants in Puerto Vallarta!!!!
May you enjoy the collection and have peaceful dreams of the beach and the pool and your buddies who love you.....all celebrating in your honor.
So VP's go run with the notion of dreaming about the future...maybe that'll be easier than Texas!! Ha!
Watch for film later...Bren and I went shopping this afternoon and I had my new FLIP video camera with me....keep watching.
To the future and beyond..."better than new!"
Tuesday, June 2, 2009
Hey VP's...I was just playing around with some pictures tonight and wanted you all to see what Vic and I have seen...yes Houston, we have tumor shrinkage! This sure does give us hope and keeps us on the path. Amazing! Although it's slow and we're impatient, we can see results from the "Cure Juice" and we wanted to share that with you...our amazing support system.
Brenda slept a lot today and felt better tonight when some large foreign and unmentionable object came out of her sinus cavity. I'll spare you all a trip to the bathroom to throw up by saying, "It was NASTY!!" We Skyped Doc Vic to ask what on earth it was...Callie was about to pass out after checking it out. But amazing as this journey is...we did a taste test after we disposed of the alien...and things don't taste so bad. She had some Moose Tracks ice cream and a bit of brownie (neither of which she could eat before she drove the creature from the depths of her sinus cavity.) She could actually taste chocolate!!! There is hope that a lot of that nasty taste might be related to "the creature." Keep your fingers crossed. We'll do more experimentation tomorrow.
Let the healing continue...thanks for traveling the path with us. Be thankful we didn't introduce you to the "Nasty Nasal Nemesis."
Mornin VP's...Brenda had a rough night last night...poor thing. On top of ending her 3rd round of chemo and being amped up on the steroids they have to give her, she got a Neulasta shot yesterday that helped to make her miserable last night. Her stomach was bothering her because she needed some of her meds and couldn't take them due to time limits on the dosage. She had a spliting headache and she can't take any asprin products...they said she could take MORPHINE...but you know...we just didn't have any of that around the apartment and the last time I checked, that wasn't something I could get at the local drugstore!!! She was aching and sweaty but wasn't running a fever. She needed to eat somehting but couldn't find the noodles that I bought her yesterday. Everything else we have here in the apartment make her gag! Bless her heart....she didn't want to wake me up to show her where the dang noodles were. We worked that problem out this morning and now she knows to wake me up to help and we'll have emergency noodles/food sitting out on the counter ready to be pressed into action. She's got her meds on board now and is eating some food so she's feeling a little bit better. She'll sleep today and that's a good thing. Here's Michele's post for today:
The NJ gang got together with the Mass gang adn they had a great weekend in New York City. Michele wanted all of us to share in the fun they had and gave us this little montague' to post. Amanda is ALWAYS on the ball (no pun intended...read on and you'll get that one...) wanting to offer medical support to all that need it...well just ready Michele's post:
As you may recall, Cate, Amanda, Kim, Wendy joined Karen and me in NYC for a fun filled weekend (yes the weekend that included the MAC purchase). However, I will not talk of MACS on this entry, even if they pale in comparison to the computers ;)
NYC is a wonderful place to visit particularly because there are so many neighborhoods; each one unique and each one with a special surprise. On this particular day we were making our way thru SOHO heading to Little Italy for dinner (via the Apple store - Okay I'll stop). As we made our way down this particular avenue we stumbled upon this life size stainless steel bull.
So being a group of pretty smart women, we put 2 + 2 together; "Big in Texas" theme and "Bull in NYC". Of course we had to grab the shot to prove that even a major city can compete with Texas for big and bull. A wonderful couple offered to take the photo so we could all be in the picture for our Chemo Sabe. A bonus, he did not try to make off with the camera - NYC is improving.
Anyway, we were completing our photo shoot when of course Amanda, being the thorough doc that she is decided to examine the bull as well. She determined the horns were of good quality and the overall frame was pretty solid and clearly this was a prime specimen. I thought she had completed the exam, after all it is a stainless steel bull. But no that's when things went south - pardon the pun. Before we knew what was going on, Amanda was doing some kind of "medical exam" on the poor bull's genitalia.
I cannot serve as a complete witness in this case because as I snapped the photo, I heard Amanda whispering instructions to the bull "to cough". I'm sorry but she lost me on that one.
Now I know my integrity has been, shall we say suspect, in the past when it comes to getting the facts correct. I will be the first to admit that I do take some liberties if it makes for a better story. In some cases that criticism is fair. In other cases - well you now how those turned out - I WON!!!!!.
Anyway, rather than have to go through a few days of suspicion and people questioning my character, I thought I would show the two photos this time to prove my point. I will let you all be the judge on my integrity.
However, for the bigger in Texas theme - this is one big bull - from all perspectives!!
Chemo Sabe when you are "better than new", I am sure we can hook you up here for a ride. Bring your snappy new cowboy hat.
Thanks for the great story and pics that made us smile on a rough morning...perfect timing.