Cancer Support and Caregivers Who Are Trail Blazers!

[JustJo]

Super fast update then I'm headed back to the ER....Mom's picc line was halfway out last night, so waiting and waiting to get it replaced today.

Struggling with pain meds....docs in FL don't prescribe but send to a separate pain management doc. Of course, they neglected to mention this (and mom neglects to mention that she's almost out) until we have difficulty getting a refill right before the holiday weekend.

Nightmare.

I'm kicking desks (figuratively speaking) and shouting at people (for real) ...and we have a short-term solution, an appointment with said pain mgmt specialist...and it'll all be okay...but it's taking a heck of a toll on me in the process.

My research, thanks to all this, also makes me think that a lot of her dizziness, fatigue and lack of appetite may be in part due to the morphine she's been on since the spring.

[Midnight]

Originally Posted by JustJo

Super fast update then I'm headed back to the ER....Mom's picc line was halfway out last night, so waiting and waiting to get it replaced today.

Struggling with pain meds....docs in FL don't prescribe but send to a separate pain management doc. Of course, they neglected to mention this (and mom neglects to mention that she's almost out) until we have difficulty getting a refill right before the holiday weekend.

Nightmare.

I'm kicking desks (figuratively speaking) and shouting at people (for real) ...and we have a short-term solution, an appointment with said pain mgmt specialist...and it'll all be okay...but it's taking a heck of a toll on me in the process.

My research, thanks to all this, also makes me think that a lot of her dizziness, fatigue and lack of appetite may be in part due to the morphine she's been on since the spring.

Hi Jo
Thinking of you and your mum during this difficult time.

[DapperButch]

Originally Posted by claybaby

hey peeps....just a quick note..I am up and about today...still weak, BUT al uphill from here on out..and Home Health will be here Monday to assess my needs, and PT will be coming as well...
I am still not real clear in the brain...BUT want to post so pardon all the typos...lol..
DAPPER: best I can tell between 35 and 45 lbs...in last 8 to 10 weeks....with MOST being last 3 to 4 weeks. I am getting some of the ensure drinks when we go to grocery store..
COUNTY: I heart you, darling!!! YOU have made this so much more pleasureable, been so selfless, and I know your back and hip suffered with that miserable "gaucho" sofa you endured for TWO WEEKS, and woke every time with a sweet smile...YOU simply ROCKKKKKKK....
I heart ALL of you.....Merry Christmas, I know I have the MOST amazing one in a few years now...thank, you....all your sweet messages, PM's, etc and calls...smiles.....later peeps...
I made COUNTY go get a nap in...I am waiting for my baby dachsie to come home..I haven;t seen her in 2 weeks....whooohooo....I HEART YOU ALL>>..Clay

The pecan flavored Ensure drinks are really good! Glad you are going to get the pup back soon!

You didn't answer me about the chemo?

Originally Posted by JustJo

Super fast update then I'm headed back to the ER....Mom's picc line was halfway out last night, so waiting and waiting to get it replaced today.

Struggling with pain meds....docs in FL don't prescribe but send to a separate pain management doc. Of course, they neglected to mention this (and mom neglects to mention that she's almost out) until we have difficulty getting a refill right before the holiday weekend.

Nightmare.

I'm kicking desks (figuratively speaking) and shouting at people (for real) ...and we have a short-term solution, an appointment with said pain mgmt specialist...and it'll all be okay...but it's taking a heck of a toll on me in the process.

My research, thanks to all this, also makes me think that a lot of her dizziness, fatigue and lack of appetite may be in part due to the morphine she's been on since the spring.

Gosh, Jo. I am so sorry this is happening. Please keep us updated.

[clay]

You didn't answer me about the chemo?Hey DAPPER: I am so sorry....I did forget to asnwer you about the chemo ? NO...no chemo OR rad. for me..it was ALL gotten with surgery AND I am "officially CANCER FREE"...yayyyyyyy Hugs to you and TF from County & I...smiles

[DapperButch]

Originally Posted by claybaby

You didn't answer me about the chemo?Hey DAPPER: I am so sorry....I did forget to asnwer you about the chemo ? NO...no chemo OR rad. for me..it was ALL gotten with surgery AND I am "officially CANCER FREE"...yayyyyyyy Hugs to you and TF from County & I...smiles

That's what I thought, but I wanted to hear it from the horse's mouth!

WOO HOO
CONGRATULATIONS!!!!!!

[/SIZE]

[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!

[clay]

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]

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

Tommi

[clay]

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]

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]

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!

[JustJo]

Hello everyone,

Just a quick Mom update....she's actually doing a bit better. We got her off the morphine and on lortabs (think that's right) and it seems to have helped. The fatigue and dizziness is diminishing and her appetite is much improved. We mix her drinks with half Pedialyte, and the dehydration is also much improved as a result.

She still gets (and needs) 12 hours of TPN each night, but we're managing to get about 1,000 - 1,200 calories of real food into her every day, and of a wide variety of things. The nausea is 90% gone....and she's very very slowly beginning to gain a little weight.

She still could not live alone at this point (and probably never again), but she is far more comfortable than she was....which makes us both feel better.

She actually got up this morning, made herself some hot chocolate, and was enjoying it out on the patio.

[Countyfem]

Originally Posted by JustJo

Hello everyone,

Just a quick Mom update....she's actually doing a bit better. We got her off the morphine and on lortabs (think that's right) and it seems to have helped. The fatigue and dizziness is diminishing and her appetite is much improved. We mix her drinks with half Pedialyte, and the dehydration is also much improved as a result.

She still gets (and needs) 12 hours of TPN each night, but we're managing to get about 1,000 - 1,200 calories of real food into her every day, and of a wide variety of things. The nausea is 90% gone....and she's very very slowly beginning to gain a little weight.

She still could not live alone at this point (and probably never again), but she is far more comfortable than she was....which makes us both feel better.

She actually got up this morning, made herself some hot chocolate, and was enjoying it out on the patio.

That's great news Jo, I hope you both can enjoy this time together.

[JustJo]

Good morning all

Sharing some good news....after over a year of having no interest in food and being unable to eat, Mom has turned a big corner. She actually woke up hungry in the middle of the night last night...enough to get up and get a snack. She woke up hungry again this morning....and was making herself peanut butter toast and orange juice while I was still pouring my first cup of coffee.

She's slowing gaining weight....and she's eating a huge variety of food frequently through the day.

Pretty amazing stuff.

When I look at her now, as compared to when she arrived only about 3 weeks ago, her color is better...she is stronger...the dizziness is gone...she's eating all kinds of things throughout the day rather than 1 or maybe 2 cartons of yogurt only....and her dehydration problem is completely resolved (thank goodness for Pedialyte....that stuff is a miracle).

Her mood has improved dramatically as a result, now that she is feeling more like herself....and she's talking about how she could do this with chemo every 3 weeks for quite some time....rather than planning and waiting for her death.

She knows that the cancer isn't going to get cured....and we're only buying time....but now she's ready to buy it, and enjoy it....and that's good.

[Countyfem]

That is terrific news! Take this most precious time and enjoy! (((jo and mom)))

[clay]

To EVERYONE here....may each and every one of you be blessed in the New Year. May we all have love abundantly..in so many forms, be gentler with one another, kinder to strangers, and more loving of ourselves..we are ALL BRAVE WARRIORS...whether we march to the Cancer Dance or are a supporter...EVERYONE is VITAL! Just here on the Planet alone...we have seen so many wonderful, incredible miracles happen. I know my own Cancer was MY BLESSING...it brought some incredible people into my life...it opened my eyes...mad em gentler to others....mor eloving of myself...and being there for others...I NEVER once saw my diagnosis as a "death sentence"...for we truly have nothing to fear..except fear itself..and I have seen each and every one of you..face some terrifying diagnoses, scares, challenges, and wheteher a marcher or a drummer...YOU ALL handled it with style, class, grace, and poise, and opened yourselves up to the rest of us...some mighty fine, BRAVE WARRIORS reside in this thread...and I heart you all..YOU are all so fucking BRAVE!!! The battles we faced, fought, and won..and are winning are much worse than any battlefield abroad...these battles occured right in our very souls...BUT we marched on...every time we faltered..someone else was here to guide us, encourage us, and lend a hand up..NO ONE IS LEFT BEHIND here....so...I wish us all health, love, and peace within..we have climbed those mountains now...let's enjoy the friendships and heartships we have made here...I LOVE YOU ALL>>each and every one...whether you are a fighter or a supporter..YOU all fucking rockkkk!!!! xoxoxooxo.....Clay
Big Butch hugs to ALL of you....

[DapperButch]

Originally Posted by JustJo

Good morning all

Sharing some good news....after over a year of having no interest in food and being unable to eat, Mom has turned a big corner. She actually woke up hungry in the middle of the night last night...enough to get up and get a snack. She woke up hungry again this morning....and was making herself peanut butter toast and orange juice while I was still pouring my first cup of coffee.

She's slowing gaining weight....and she's eating a huge variety of food frequently through the day.

Pretty amazing stuff.

When I look at her now, as compared to when she arrived only about 3 weeks ago, her color is better...she is stronger...the dizziness is gone...she's eating all kinds of things throughout the day rather than 1 or maybe 2 cartons of yogurt only....and her dehydration problem is completely resolved (thank goodness for Pedialyte....that stuff is a miracle).

Her mood has improved dramatically as a result, now that she is feeling more like herself....and she's talking about how she could do this with chemo every 3 weeks for quite some time....rather than planning and waiting for her death.

She knows that the cancer isn't going to get cured....and we're only buying time....but now she's ready to buy it, and enjoy it....and that's good.

Jo, that is fantastic! I am truly grinning ear to ear!

[julieisafemme]

Ok more good news! My Mom saw the oncologist and she is doing really well. All her blood tests look great. She told her to go out and enjoy herself. She went to the grocery store and the book store and was so happy to be out. She is still weak and tired but feeling good and no pain! Her appetite is great and she is gaining weight. January 10 is her next round of chemo.

It is amazing to me how well she has done with the chemo. She was against it because of what she saw my Grandma go through. That was over 30 years ago. Things have gotten better with cancer treatment. She was in a lot pain before and not eating and now she has no pain and is eating great.

Tomorrow night we will have a little party at her house for the new year.

I am so happy and feel so blessed.

Jo I am happy your Mom is doing so well! Maybe it was the morphine that made her feel so bad?

Happy New Year to you all! Clay I am inspired by your posts and your positive attitude. This thread has made things a little easier.

[clay]

julieisafemme...that is awesome...wtg Mom!!!! BIG hugs to you both...just let he rlive her life...how she may choose...and enjoy what she wants...it will all be great for her....thanks for the wonderful post..
Happy New Year to your family also!
Keep on a rockin', mom? Does she want a "date" for NYE? smiles....
Hang in there kid....
((((((((((((((Jo & Mom))))))))))))))) great news as well...may you two be blessed and have a wonderful New Year....hugs..
I heart you all..Clay