Cancer Support and Caregivers Who Are Trail Blazers!

JustJo · 12-24-2011, 11:23 AM

Hi everyone,

We got the picc line replaced yesterday....so long tiring day but all resolved at the end. I also browbeat a prescription for Lortab out of her NY doctor...so she's not completely out of pain meds for the long weekend....and we'll be seeing the pain management specialist early in the week. I'm more and more convinced that we need to get her off the morphine....simply standing up makes her so dizzy that she has to put her head down and hold onto something for a minute or two.

Her weight is down a bit since the TPN is only 12 hours instead of 24 now....but she is eating a bit more. I figure I'm managing to get 800 to 1000 calories a day into her. Going off the morphine might help with her appetite and ability to eat.

Not what it should be...but an improvement. The Pedialyte also seems to be helping her somewhat...so we're keeping that up. I know I annoy her, handing her food or drink every 2 hours, but she would go all day with virtually nothing if it was left up to her. My pushy broad side is getting a workout.

Hugs to you all....glad to hear Clay and Julie's mom are home for the holiday and getting lots of support and care. Merry Christmas to you all!

clay · 12-24-2011, 12:01 PM

Quote:

Originally Posted by JustJo

Hi everyone,

We got the picc line replaced yesterday....so long tiring day but all resolved at the end. I also browbeat a prescription for Lortab out of her NY doctor...so she's not completely out of pain meds for the long weekend....and we'll be seeing the pain management specialist early in the week. I'm more and more convinced that we need to get her off the morphine....simply standing up makes her so dizzy that she has to put her head down and hold onto something for a minute or two.

Her weight is down a bit since the TPN is only 12 hours instead of 24 now....but she is eating a bit more. I figure I'm managing to get 800 to 1000 calories a day into her. Going off the morphine might help with her appetite and ability to eat.

Not what it should be...but an improvement. The Pedialyte also seems to be helping her somewhat...so we're keeping that up. I know I annoy her, handing her food or drink every 2 hours, but she would go all day with virtually nothing if it was left up to her. My pushy broad side is getting a workout.

Hugs to you all....glad to hear Clay and Julie's mom are home for the holiday and getting lots of support and care. Merry Christmas to you all!

hey JustJo...hugs right back at ya....you & mom are in our thoughts & prayers...do you have a Hospice Center there? Those RN's are awesome and the oncologists have a "protocol" or "regimen" of drugs and having Hospice involved insures your getting, having, and with access 24/7 to ANY med she may need. She needs to have an rx for Zofran (generic is: ondansetron) 4 mg. disintegrating tablets...to use every 4 hrs.....as needed....for the nausea...AND sounds like she would be an ideal candidate for Oxycontin...and it comes in liquid...the Morphine is horrible. I initially had a pump of Dilaudid IV for pain and an epidual with pain cotrol meds in it....and had to switch to MS (morphine) which I HATED to take..I only pushed my "button" for that med a total of 20 times in the whole 12 days I had it...smiles....(HIGH tolerance) to pain..smiles...
Anyway I am certainly not trying to prescribe or "manage" BUT offer you some suggestions..smiles....I am a nurse....smiles....
Take care..and YOU are doing an awesome job....give yourself a pat on the back...Clay

Tommi · 12-24-2011, 12:13 PM

Wishing you the imagination of a child, the wishes of yesteryear, and the magic of the season for tonight and always.

Tommi

clay · 12-24-2011, 12:18 PM

Having been split straight down the middle of my belly from tip of sternum to edge of pubic area....and still with 38 staples in place....
makes it VERY difficult for one to "bend and dress oneself"...so upon accepting generous offers from one countyfem to don my boxers for me...
ALAS! I awoke in the middle of the night....and couldn't find the "fly opening" in front....so as I stood and pulled them down...I discovered the fly was in back...sooo....guess ya had to be there to appreciate it..but I know the butches will rotfltao.....I know I did....will I let her doff/don them for me again...YOU BETCHA! She was the prettiest shades of crimson and amethyst I have ever seen when I showed her what she had done...so I am enrolling her in the class on "how to dress a boi" next semester...lmao...I heart you baby!!! you know I do!

JustJo · 12-24-2011, 12:30 PM

Quote:

Originally Posted by claybaby

hey JustJo...hugs right back at ya....you & mom are in our thoughts & prayers...do you have a Hospice Center there? Those RN's are awesome and the oncologists have a "protocol" or "regimen" of drugs and having Hospice involved insures your getting, having, and with access 24/7 to ANY med she may need. She needs to have an rx for Zofran (generic is: ondansetron) 4 mg. disintegrating tablets...to use every 4 hrs.....as needed....for the nausea...AND sounds like she would be an ideal candidate for Oxycontin...and it comes in liquid...the Morphine is horrible. I initially had a pump of Dilaudid IV for pain and an epidual with pain cotrol meds in it....and had to switch to MS (morphine) which I HATED to take..I only pushed my "button" for that med a total of 20 times in the whole 12 days I had it...smiles....(HIGH tolerance) to pain..smiles...
Anyway I am certainly not trying to prescribe or "manage" BUT offer you some suggestions..smiles....I am a nurse....smiles....
Take care..and YOU are doing an awesome job....give yourself a pat on the back...Clay

Thank Clay.

She is on the Zofran, which helps a little but not completely.
Hospice can't/won't do anything until she rejects all chemo treatment...and she's not quite ready to do that yet.

Her current/new oncologist down here is proposing modifying her chemo to something that will be less hard on her and only every 3 weeks (since she can't be cured anyway)....and she wants to see if that helps her quality of life.

Right now we're just one step at a time...but it's an uphill battle.

DapperButch · 12-25-2011, 04:33 PM

Merry Christmas and Happy Holidays to all survivors, caregivers, supporters, and those fighting and recovering from cancer!

May we all have a healthy New Year!

Novelafemme · 12-27-2011, 04:35 PM

I'm so happy to log on and see that most everyone is doing so well! {{{Jo}}} My thoughts are with you and your mom. I would only hope that were I in her shoes things would be made as painless and restful as possible. How are YOU holding up?

I spoke with my sister today and she is doing amazingly well. Her doctor even made a comment this morning that he hasn't seen anyone respond to the chemo protocol she is currently on quite so well as Lisa has. She is two lbs. shy of her normal weight and is feeling wonderful. I was originally going to fly out there with the girls in February but cancelled that trip since it was rapidly getting crazy expensive. Then last week I found a round trip ticket to/from Tucson to LaGuardia for $197!!! So, I fly out on the 24th and will surprise her by showing up to her fourth chemo treatment.

I am terrible with secrets so it's gonna be hell keeping it to myself!!

I am going in for a second opinion on the polyps I recently had removed. Grrrr. And ONLY because I am being forced to! I guess it's better to be safe than sorry, but I am so over being poked and prodded!

CLAY!!! So happy to hear you are doing well. I owe you a phone call one of these days.

12-24-2011, 11:23 AM	#1
JustJo Infamous Member How Do You Identify?: pushy broad Preferred Pronoun?: she Relationship Status: Follow your heart; it knows things your mind cannot explain. Join Date: Jan 2010 Location: Southeast corner Posts: 5,633 My Photo Gallery Thanks: 24,417 Thanked 25,405 Times in 4,660 Posts Rep Power: 21474857	Hi everyone, We got the picc line replaced yesterday....so long tiring day but all resolved at the end. I also browbeat a prescription for Lortab out of her NY doctor...so she's not completely out of pain meds for the long weekend....and we'll be seeing the pain management specialist early in the week. I'm more and more convinced that we need to get her off the morphine....simply standing up makes her so dizzy that she has to put her head down and hold onto something for a minute or two. Her weight is down a bit since the TPN is only 12 hours instead of 24 now....but she is eating a bit more. I figure I'm managing to get 800 to 1000 calories a day into her. Going off the morphine might help with her appetite and ability to eat. Not what it should be...but an improvement. The Pedialyte also seems to be helping her somewhat...so we're keeping that up. I know I annoy her, handing her food or drink every 2 hours, but she would go all day with virtually nothing if it was left up to her. My pushy broad side is getting a workout. Hugs to you all....glad to hear Clay and Julie's mom are home for the holiday and getting lots of support and care. Merry Christmas to you all! __________________ I'm not tall enough to ride emotional roller coasters

12-24-2011, 12:13 PM	#3
Tommi Infamous Member How Do You Identify?: Usually "Hello" Relationship Status: Married and Bound to Tommi's kaijira (Ts_kaijira ) Join Date: Nov 2009 Location: Suthun.... California that is. Across the ridge from Laguna Beach. Posts: 8,151 My Photo Gallery Thanks: 13,621 Thanked 21,337 Times in 5,970 Posts Rep Power: 21474860	Merry Christmas to all. Wishing you the imagination of a child, the wishes of yesteryear, and the magic of the season for tonight and always. Tommi

12-24-2011, 12:18 PM	#4
clay Practically Lives Here How Do You Identify?: Butch (Silver Fox) Dom Daddi Preferred Pronoun?: 50 Shades of Clay Darker & Deeper Relationship Status: married to my forever Join Date: May 2011 Location: salt air & sandy beaches Posts: 13,136 My Photo Gallery Thanks: 97,020 Thanked 31,666 Times in 7,748 Posts Rep Power: 21474864	a rather funny story Having been split straight down the middle of my belly from tip of sternum to edge of pubic area....and still with 38 staples in place.... makes it VERY difficult for one to "bend and dress oneself"...so upon accepting generous offers from one countyfem to don my boxers for me... ALAS! I awoke in the middle of the night....and couldn't find the "fly opening" in front....so as I stood and pulled them down...I discovered the fly was in back...sooo....guess ya had to be there to appreciate it..but I know the butches will rotfltao.....I know I did....will I let her doff/don them for me again...YOU BETCHA! She was the prettiest shades of crimson and amethyst I have ever seen when I showed her what she had done...so I am enrolling her in the class on "how to dress a boi" next semester...lmao...I heart you baby!!! you know I do! __________________ To find someone who will love you for no reason, and to shower that person with reasons, that is the ultimate happiness. ~Robert Brault

12-25-2011, 04:33 PM	#6
DapperButch Roadster Guy How Do You Identify?: FTM, Stone Butch Preferred Pronoun?: He Join Date: Nov 2009 Location: Northeast Posts: 7,745 My Photo Gallery Thanks: 26,545 Thanked 26,810 Times in 5,772 Posts Rep Power: 21474858	Happy Holidays! Merry Christmas and Happy Holidays to all survivors, caregivers, supporters, and those fighting and recovering from cancer! May we all have a healthy New Year! __________________ -Dapper Are you educated or indoctrinated?

12-27-2011, 04:35 PM	#7
Novelafemme Timed Out - TOS Drama How Do You Identify?: ........ Join Date: Nov 2009 Location: ........ Posts: 2,402 My Photo Gallery Thanks: 4,981 Thanked 8,925 Times in 1,834 Posts Rep Power: 0	I'm so happy to log on and see that most everyone is doing so well! {{{Jo}}} My thoughts are with you and your mom. I would only hope that were I in her shoes things would be made as painless and restful as possible. How are YOU holding up? I spoke with my sister today and she is doing amazingly well. Her doctor even made a comment this morning that he hasn't seen anyone respond to the chemo protocol she is currently on quite so well as Lisa has. She is two lbs. shy of her normal weight and is feeling wonderful. I was originally going to fly out there with the girls in February but cancelled that trip since it was rapidly getting crazy expensive. Then last week I found a round trip ticket to/from Tucson to LaGuardia for $197!!! So, I fly out on the 24th and will surprise her by showing up to her fourth chemo treatment. I am terrible with secrets so it's gonna be hell keeping it to myself!! I am going in for a second opinion on the polyps I recently had removed. Grrrr. And ONLY because I am being forced to! I guess it's better to be safe than sorry, but I am so over being poked and prodded! CLAY!!! So happy to hear you are doing well. I owe you a phone call one of these days.