Happy Sunday before Thanksgiving to you all...
Over the last week it's become quite apparent to us that in order to successfully navigate the maze of modern medicine, especially when dealing with a devil of an issue like cancer, one needs a strategically placed medical ADVOCATE to help get the machine rolling in the right direction. I know some of you will say..."Boy! Is that an understatement!"
Brenda tried to call Dr. Yousell's staff on Tuesday to see if the required paperwork from Houston had arrived so we could get this radiation show on the road. You can probably guess how the phone call went. How many of us have used the same strategy when you didn't have the answers that the caller wanted! Once they knew that it was Brenda that was calling and that she wanted to know if the paperwork had arrived as promised...the employee had suddenly stepped away from her desk! GROAN! We didn't fall off the turnip truck yesterday!! We gave up that day with a message to cal us.
Brenda had an appointment with Dr. Rehl, her ENT, the next day. Let me tell you...if you EVER need a fantastic ENT, this is definitely the doctor to go to. He is kind, gentle, considerate, humble, and a GREAT doctor. He has helped Brenda in so many ways. Well we told him how much trouble we were having getting ANYWHERE with Dr. Youseff and his staff and without a hiccup, he offered to personally call him and find out what was happening and to call us back. God love our advocate...Dr. Rehl.
We weren't 15 minutes from the office and Brenda's phone rang. It was good ole Dr. Rehl who had already talked with Dr. Youseff and found out that the M D Anderson paperwork had arrive that very morning and they were just waiting for the insurance approval for the treatment and they would be able to schedule things. AMAZING! Everyone needs an advocate...I'm just sayin!
By the end of the day Brenda had an appointment to have her radiation mask made on Monday (tomorrow) and had the MRI simulation scheduled for Tuesday evening. Once that was completed the actual "Cyber Knife" treatments could begin. Yea! Lets kill this damn thing.
Dr. Rehl sensed the beginning of a sinus infection so he put Brenda on some antibiotics and after a couple days of needed sleep, Brenda is finally feeling better and has more energy. She's still anemic but her endocrinologist put her on a new iron pill with a vitamin C tablet. She feels much better today so hopefully she's on the upswing. Maybe she just wants me to do all the house reorganizing! LOL!
I've spent the last 2 days working on getting the house back in order...what a job! I'm changing out all the door hardware and cleaning, cleaning, cleaning. You get one layer of construction dust gone and another one follows it!. But we LOVE the renovation. If you need a great company to do yours, check out Premier Kitchen and Bath. They have been fantastic!
Now we're getting ready for a wonderful and very thankful Thanksgiving celebration with friends and family. We send you all "thanks" for your friendship, your good thoughts, and your prayers for a successful treatment.
God bless you all...
Nurse/Project Coordinator...Dee
Sunday, November 20, 2016
Friday, November 11, 2016
Surgery and Beyond
What a week this has been! But let's get to the important stuff right away. Brenda had her surgery on Monday. It was a very systematic biopsy of sites in her sinus cavity and up in the cribaform (SP?) bone where they found that nodule during her last surgery. They did find a pocket of cancer cells about the size of a dime in diameter and about the thickness of about 3 to 4 dimes in that bone above her sigmoid sinus and her brain. It's not in an easy place but it can be treated and that's the good news. It's not bone cancer, but the neuro-endocrine cancer she had that's in the bone...there is a difference.
Brenda stayed the night just to make sure she was OK from the procedure...she did wonderfully! On her discharge paperwork they said to get in touch with Dr. Youseff (radiation oncologist) ASAP for the radiation to start. Since we were right there where that will be happening, we stopped by the office to make that appointment. This is where things went to shit.
When we first saw Dr. Youseff he said that they would send away to MD Anderson in Houston for the files and necessary documents they would need from her last treatment. Well the office told us that they had requested it on several occasions and have received nothing and that we can't make an appointment until Dr. Youseff gets those files and reviews them. I about lost my mind! No one called us to tell us they were having problems. In true Brenda fashion...she remained calm while I was ready to take a plane to Houston and get all the records myself. So we get home and Brenda calls M D Anderson only to be told that they never received any request...Now I'm really pissed. This is the love of my life who has a time bomb growing in her head and we can't get folks to do their job and get some paperwork! REALLY? Brenda and I got so frustrated with their lack of followup that we just had to have a couple beers!
So it was about 7:30 on Wednesday when I got a call from my mothers assisted living facility that said she had fainted that morning and was unresponsive for a time but finally did wake up. They called the paramedics and she was taken to the local hospital. She is 95 so it's never a good thing when this happens. I zoomed over there to see what was up and found her sitting in her hospital bed in the ER, wide awake and very alert. I could breathe again! It appears that she became extremely dehydrated...she's on water pills to bleed off excess water...she has congestive heart failure, her blood pressure dropped and she fainted. The good news is that the care team was with her at the time to give her her morning meds and they caught her as she went down so she didn't hurt herself. They did a full workup but her kidneys took a hit because she got too dry and so she had to stay the night. I went back to her apartment and got some clothes for her release and her coloring books so she tolerated the stay watching TV and coloring.
While that was going on, Brenda actually made some headway with the paperwork problem. We got Venessa from Dr. Youseff's office to actually take over the responsibility of getting the records and apparently they should have them today. The images that he wanted could be e-mailed so I guess I don't have to fly to Houston right now. But we still can't make the appointment until the doc reads all the material which makes no sense to me. Shouldn't you make the appointment...it's never the next day...and then he can review the stuff in the time before we actually come in? Some of this stuff I just don't understand.
So our house remodel is almost done. We actually get to move in this weekend. We're meeting our designer there today to go over things and they are supposed to finish the plumbing install and the carpet install today which means we can move furniture back in. We gave away our old couch and chair so we also have to go look for some new stuff...that's always fun.
So I think that covers this weeks episode of "As Our World Turns Upside Down!!" We so appreciate your good thoughts and prayers...please keep them coming. We are also accepting BEER! LOL! Love to you all...
Nurse Dee
PS: Mom got out yesterday and is doing fine...I just have to get her a bunch of follow-up visits with her doctors.
Brenda stayed the night just to make sure she was OK from the procedure...she did wonderfully! On her discharge paperwork they said to get in touch with Dr. Youseff (radiation oncologist) ASAP for the radiation to start. Since we were right there where that will be happening, we stopped by the office to make that appointment. This is where things went to shit.
When we first saw Dr. Youseff he said that they would send away to MD Anderson in Houston for the files and necessary documents they would need from her last treatment. Well the office told us that they had requested it on several occasions and have received nothing and that we can't make an appointment until Dr. Youseff gets those files and reviews them. I about lost my mind! No one called us to tell us they were having problems. In true Brenda fashion...she remained calm while I was ready to take a plane to Houston and get all the records myself. So we get home and Brenda calls M D Anderson only to be told that they never received any request...Now I'm really pissed. This is the love of my life who has a time bomb growing in her head and we can't get folks to do their job and get some paperwork! REALLY? Brenda and I got so frustrated with their lack of followup that we just had to have a couple beers!
So it was about 7:30 on Wednesday when I got a call from my mothers assisted living facility that said she had fainted that morning and was unresponsive for a time but finally did wake up. They called the paramedics and she was taken to the local hospital. She is 95 so it's never a good thing when this happens. I zoomed over there to see what was up and found her sitting in her hospital bed in the ER, wide awake and very alert. I could breathe again! It appears that she became extremely dehydrated...she's on water pills to bleed off excess water...she has congestive heart failure, her blood pressure dropped and she fainted. The good news is that the care team was with her at the time to give her her morning meds and they caught her as she went down so she didn't hurt herself. They did a full workup but her kidneys took a hit because she got too dry and so she had to stay the night. I went back to her apartment and got some clothes for her release and her coloring books so she tolerated the stay watching TV and coloring.
While that was going on, Brenda actually made some headway with the paperwork problem. We got Venessa from Dr. Youseff's office to actually take over the responsibility of getting the records and apparently they should have them today. The images that he wanted could be e-mailed so I guess I don't have to fly to Houston right now. But we still can't make the appointment until the doc reads all the material which makes no sense to me. Shouldn't you make the appointment...it's never the next day...and then he can review the stuff in the time before we actually come in? Some of this stuff I just don't understand.
So our house remodel is almost done. We actually get to move in this weekend. We're meeting our designer there today to go over things and they are supposed to finish the plumbing install and the carpet install today which means we can move furniture back in. We gave away our old couch and chair so we also have to go look for some new stuff...that's always fun.
So I think that covers this weeks episode of "As Our World Turns Upside Down!!" We so appreciate your good thoughts and prayers...please keep them coming. We are also accepting BEER! LOL! Love to you all...
Nurse Dee
PS: Mom got out yesterday and is doing fine...I just have to get her a bunch of follow-up visits with her doctors.
Sunday, November 6, 2016
The Best Laid Plans Took a Dive Again!
Good morning village people...
So let me update you since my last entry. Brenda had to leave our beloved mountain home on Sunday Oct. 30th to help with some things in the valley on the 31st and to go to a hearing test and get a haircut on Tuesday. She came back up to Pinetop on Wednesday. We celebrated her return (I stayed up there with the dogs because our house isn't finished) with our favorite pizza dinner at Red Devil Pizza...yummy. We enjoyed the night watching Survivor (we're total fans) and then watched a couple more episodes of Season 3 of "The Fall" on Netflix...great series!
We were enjoying Thursday morning with our iPad's, a steaming cup of coffee, and a cozy fire in the pellet stove...it was in the low 40's and a rainy morning. It was heavenly. So we were just planning the day when Brenda's phone rang and our calm peaceful world shifted into high gear. I know you know the feeling when that happens. It was St. Joseph's Hospital calling to tell Brenda that she needed to be in the hospital for her pre-op tests on Friday because the surgery had been moved up to Monday. Are you kidding me???
So remember...we don't have our house in the valley, and the dogs need to go to Tucson to stay with our dear friends who volunteered to watch them. Plus the lodge hadn't been cleaned or winterized and it was already 11:00 am. We shifted into high gear, packed up stuff for some unknown time down in the valley and away we went. My totally awesome friend and her husband from Tucson said they would meet me in Casa Grande...about an hour south of Phoenix, to take the dogs and to save me that time driving. God love them. I'm telling you...it really takes a village and we are so appreciative to everyone for all they do to help us get through this.
We got to the valley in the late afternoon, went to our house, and I picked up the dog gear needed for the Tucson transfer, and off I went to Casa Grande. Brenda went over to our dear friends Becky and Vicki (that's where we will be staying) and proceeded to cook a fantastic dinner for them...that's just what she does for folks. She's such a good cook. I had dinner with my friends and told Caden and Penny (our Dobies) to be good guests and got back to Becky's around 9:00 pm. Can you say "POOPED!"
The next day Brenda went off to her tests at the hospital which took most of the day and I went to a funeral of a man I worked with at the police department for about 20 years...his death was unexpected and such a surprise to us all. Life is precious and should be appreciated to the max each day.
Saturday was full of errands and today we are taking my Mom, sister and brother-in-law (visiting from Michigan) to the movies ("Inferno") and dinner at the local restaurant/pub. It'll be a nice distraction before tomorrows surgery. I can't tell you exactly what's going to happen tomorrow except they are going to try and determine the margins of the cancer...hopefully take out what they can. I just don't exactly know. I'll be able to tell you more tomorrow. Please say an extra prayer or two that this is SMALL and can be successfully treated. We are so appreciative of your prayers and good thoughts.
So dear ones...more tomorrow
Enjoy the day...
Dee
So let me update you since my last entry. Brenda had to leave our beloved mountain home on Sunday Oct. 30th to help with some things in the valley on the 31st and to go to a hearing test and get a haircut on Tuesday. She came back up to Pinetop on Wednesday. We celebrated her return (I stayed up there with the dogs because our house isn't finished) with our favorite pizza dinner at Red Devil Pizza...yummy. We enjoyed the night watching Survivor (we're total fans) and then watched a couple more episodes of Season 3 of "The Fall" on Netflix...great series!
We were enjoying Thursday morning with our iPad's, a steaming cup of coffee, and a cozy fire in the pellet stove...it was in the low 40's and a rainy morning. It was heavenly. So we were just planning the day when Brenda's phone rang and our calm peaceful world shifted into high gear. I know you know the feeling when that happens. It was St. Joseph's Hospital calling to tell Brenda that she needed to be in the hospital for her pre-op tests on Friday because the surgery had been moved up to Monday. Are you kidding me???
So remember...we don't have our house in the valley, and the dogs need to go to Tucson to stay with our dear friends who volunteered to watch them. Plus the lodge hadn't been cleaned or winterized and it was already 11:00 am. We shifted into high gear, packed up stuff for some unknown time down in the valley and away we went. My totally awesome friend and her husband from Tucson said they would meet me in Casa Grande...about an hour south of Phoenix, to take the dogs and to save me that time driving. God love them. I'm telling you...it really takes a village and we are so appreciative to everyone for all they do to help us get through this.
We got to the valley in the late afternoon, went to our house, and I picked up the dog gear needed for the Tucson transfer, and off I went to Casa Grande. Brenda went over to our dear friends Becky and Vicki (that's where we will be staying) and proceeded to cook a fantastic dinner for them...that's just what she does for folks. She's such a good cook. I had dinner with my friends and told Caden and Penny (our Dobies) to be good guests and got back to Becky's around 9:00 pm. Can you say "POOPED!"
The next day Brenda went off to her tests at the hospital which took most of the day and I went to a funeral of a man I worked with at the police department for about 20 years...his death was unexpected and such a surprise to us all. Life is precious and should be appreciated to the max each day.
Saturday was full of errands and today we are taking my Mom, sister and brother-in-law (visiting from Michigan) to the movies ("Inferno") and dinner at the local restaurant/pub. It'll be a nice distraction before tomorrows surgery. I can't tell you exactly what's going to happen tomorrow except they are going to try and determine the margins of the cancer...hopefully take out what they can. I just don't exactly know. I'll be able to tell you more tomorrow. Please say an extra prayer or two that this is SMALL and can be successfully treated. We are so appreciative of your prayers and good thoughts.
So dear ones...more tomorrow
Enjoy the day...
Dee
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