Cancer Support and Caregivers Who Are Trail Blazers! - Page 15

deb_U_taunt · 09-19-2011, 06:26 PM

Feeling whiney today. I know this is the last time I have to deal with the chemo side effects, but this bone pain is kicking my ass. I am over the pain pills and being trapped in the house. I want a pedicure, too. Damn, I am whiney,

JAGG · 09-19-2011, 06:58 PM

Quote:

Originally Posted by Debby

I rang the bell today! I even sang 'ring my bell'.

Surrounded by besties and came home to a houseful of friends. I am blessed.

Singing and dancing for Debby::::

ING DONG THE WITCH IS DEAD THE WITCH IS DEAD THE WITCH IS DEAD DING DONG THE WICKED WITCH IS DEAD!!!!!!!!!!

deb_U_taunt · 09-22-2011, 12:12 PM

Everyday gets easier. Cleaned up the house a bit and did laundry today!! I have an appt tomorrow to get set up for radiation. Feels like the hardest part is over.

Tommi · 09-22-2011, 09:41 PM

Quote:

Originally Posted by Debby

Everyday gets easier. Cleaned up the house a bit and did laundry today!! I have an appt tomorrow to get set up for radiation. Feels like the hardest part is over.

Beautiful..Your happy is showing, and it looks good on ya.

JustJo · 09-23-2011, 07:27 AM

Hi everyone,

Just doing the "mom update."

I find myself sighing heavily a lot lately. It's just crazy-making.
I talk to her every day, and she's is better some days, worse others....to be expected.
Unfortunately, what I posted before may not be the case now....

Quote:

Originally Posted by JustJo

In the meantime, the rehab/sub acute discussion is over....the doctor has decided that they're just keeping her in the hospital until they know what's going on and the Avastin clears her system. She feels better about that, and honestly so do I. She clearly feels comfortable and cared for there....and that's probably the most important thing at this point.

After undoing some of the damage done by my sister (which is good...the doctors are now actually communicating with my mother like a competent person again and respecting her wishes)....we appear to be back at "we can send you home to wait out the month."

Naturally, Mom is all for this...and they are training her to do the TPN/IV fluids changeover, with the understanding that once she can do it with no prompting or assistance....she can go home.

A friend has offered to spend the better part of each day with her...do any cleaning, cooking, take her to appointments, etc. And the nurse will come twice a day (once paid for by the insurance, once by us)....so that part is good...she'll have help.

I still have mixed feelings.

I know she'll be far more comfortable and relaxed there...which is important. I also worry because every time she's gone home, she's gotten worse. She's never had a nurse visiting her daily at home either though (as I remind myself), so any "worse" wouldn't get too bad before they put her back in the hospital.

My bigger worry is that Mom is now saying she didn't realize that the TPN was a "forever" thing, that the IV was a "forever" thing...and that she's unwilling to live that way. And, of course, the cancer isn't gone....there's more still there to be treated...and it's complicated by the long term Crohn's, which isn't gone either and never will be. She simply no longer has enough intestine left to support her life, period....so those artificial supports are not optional, and won't be "healed" out of....ever.

I respect her wishes. The choice, ultimately, is hers. No doubt she isn't the first person with stage 4 cancer to be ponderig the decision of ending medical treatment. It's just a tough thing all around.

I've told her that I am her ally. I will defend her choices, stick up for her, insist on everyone respecting her wishes...whatever they are.

When I said that, she started crying and thanked me...saying that all her friends, and my sister, would no doubt sell everything she owned, stick her in the closest nursing home and think they had done the right thing. She's right...they would...they started to until I intervened.

Thank you Tommi for the link to 5 Wishes. I read everything on the site, and printed it out....and it's coming with me, along with the composition book and a good supply of pens, when I get on the plane Wednesday.

I'm also reading "The Memory Palace" by Mira Bartok that someone (ack....maybe Novelafemme?) suggested to me. It's hard reading, but helping right now....and I'm grateful for the suggestion. Dealing with the mixed feelings coming up right now is hard going, and it's truly moment to moment and one step at a time.

Hugs,
Jo

deb_U_taunt · 09-23-2011, 08:06 AM

You are amazing..HUGS and LOVE to you and your mom

Quote:

Originally Posted by JustJo

Hi everyone,

Just doing the "mom update."

I find myself sighing heavily a lot lately. It's just crazy-making.
I talk to her every day, and she's is better some days, worse others....to be expected.
Unfortunately, what I posted before may not be the case now....

After undoing some of the damage done by my sister (which is good...the doctors are now actually communicating with my mother like a competent person again and respecting her wishes)....we appear to be back at "we can send you home to wait out the month."

Naturally, Mom is all for this...and they are training her to do the TPN/IV fluids changeover, with the understanding that once she can do it with no prompting or assistance....she can go home.

A friend has offered to spend the better part of each day with her...do any cleaning, cooking, take her to appointments, etc. And the nurse will come twice a day (once paid for by the insurance, once by us)....so that part is good...she'll have help.

I still have mixed feelings.

I know she'll be far more comfortable and relaxed there...which is important. I also worry because every time she's gone home, she's gotten worse. She's never had a nurse visiting her daily at home either though (as I remind myself), so any "worse" wouldn't get too bad before they put her back in the hospital.

My bigger worry is that Mom is now saying she didn't realize that the TPN was a "forever" thing, that the IV was a "forever" thing...and that she's unwilling to live that way. And, of course, the cancer isn't gone....there's more still there to be treated...and it's complicated by the long term Crohn's, which isn't gone either and never will be. She simply no longer has enough intestine left to support her life, period....so those artificial supports are not optional, and won't be "healed" out of....ever.

I respect her wishes. The choice, ultimately, is hers. No doubt she isn't the first person with stage 4 cancer to be ponderig the decision of ending medical treatment. It's just a tough thing all around.

I've told her that I am her ally. I will defend her choices, stick up for her, insist on everyone respecting her wishes...whatever they are.

When I said that, she started crying and thanked me...saying that all her friends, and my sister, would no doubt sell everything she owned, stick her in the closest nursing home and think they had done the right thing. She's right...they would...they started to until I intervened.

Thank you Tommi for the link to 5 Wishes. I read everything on the site, and printed it out....and it's coming with me, along with the composition book and a good supply of pens, when I get on the plane Wednesday.

I'm also reading "The Memory Palace" by Mira Bartok that someone (ack....maybe Novelafemme?) suggested to me. It's hard reading, but helping right now....and I'm grateful for the suggestion. Dealing with the mixed feelings coming up right now is hard going, and it's truly moment to moment and one step at a time.

Hugs,
Jo

deb_U_taunt · 09-23-2011, 04:41 PM

I get a break! I start radiation Oct 10th and finish Nov 18th. Dr said walking will help with the fatigue, YIPPEE back to walking the dog, when the feet stop hurting (she said give that a couple more weeks). I am feeling like I will be getting my life back some!!!!!

JustJo · 10-03-2011, 03:35 PM

Hi everyone

I'm back at home after 4 days of visiting Mom at the hospital, running her errands, taking care of things at her house and, unfortunately, having to patch up the damage that my sister did with Mom's friends as well as the doctors and hospital staff.

Overall, she's doing a bit better. She's extremely thin....skin and bones really....but she is now on a soft diet and able to keep a little food down. Nothing more than 1/2 a cup at a time, but soup, pudding, half a banana...she even wanted a strawberry milkshake enough to ask for one and drink an inch or two of it. That's huge since nothing has sounded remotely good to her for a long time now.

She's completed her TPN training (once I got her a new instructor, rewrote the instructions, and trained them on her learning style....did I mention that I'm pushy?)....but once we got that all right she sailed through and feels comfortable managing it herself.

She would like to go home for a week or two and then come here (once the Avastin clears her system and they get to see what this mass is), but that's debatable. The challenge right now is that her blood pressure is staying way too low (80s over 50s), and they are struggling to keep her fluid levels up. In the hospital they can pump her full with IVs but that won't work from home...so they're trying a medication that is supposed to help slow down the travels of fluid to the ostomy (no clue how)....but we have our fingers crossed on that.

Now that she can manage the TPN, if they can get the blood pressure and fluid levels right, then she can come here to me to get through the rest of the chemo, then build up strength and weight for a few months....and then comes the belly wash procedure (if she decides to go ahead). Right now, she's not sure. She did accept some counseling and discussion with a wonderful woman who does counseling with cancer patients for hospice....and I'm hopeful that will help her sort out her feelings and choices.

Mentally she is absolutely 100% herself, and as fiercely independent as ever...so the choices are hers, and I've committed to backing her up on whatever decision she makes.

Thanks so much to everyone for the support.

Tommi · 10-03-2011, 03:48 PM

Quote:

Originally Posted by Debby

I get a break! I start radiation Oct 10th and finish Nov 18th. Dr said walking will help with the fatigue, YIPPEE back to walking the dog, when the feet stop hurting (she said give that a couple more weeks). I am feeling like I will be getting my life back some!!!!!

Epsom salt soaks may help the neuropathy going on in your feet.

DapperButch · 10-03-2011, 04:54 PM

Quote:

Originally Posted by Tommi

Epsom salt soaks may help the neuropathy going on in your feet.

Really? I will have to try that one, too.

Right now I am on Neurontin, L-Glutamine Powder, and B-6.

And no, not working, but maybe a wee bit.

Novelafemme · 10-03-2011, 05:16 PM

Quote:

Originally Posted by DapperButch

Really? I will have to try that one, too.

Right now I am on Neurontin, L-Glutamine Powder, and B-6.

And no, not working, but maybe a wee bit.

Dapper, do you have horrible neuropathy as well? We haven't figured out anything to help it aside from ice water foot baths.

I went in for a checkup last Wednesday and she wants to do another surgery to remove a growth that has been causing me lots of pain and discomfort on my right side. I go in on the 21st and should be home that same night providing all goes well. Fingers crossed that there's no more cancer.

DapperButch · 10-03-2011, 05:32 PM

Quote:

Originally Posted by CatalinaRose

Dapper, do you have horrible neuropathy as well? We haven't figured out anything to help it aside from ice water foot baths.

I went in for a checkup last Wednesday and she wants to do another surgery to remove a growth that has been causing me lots of pain and discomfort on my right side. I go in on the 21st and should be home that same night providing all goes well. Fingers crossed that there's no more cancer.

Yes, but my neuropathy is not horrid. The Neurontin (Gabapentin) is prescribed by my oncologist (600mg twice a day). The L-Glutamine powder (35-40g) and B-6 (100mg, twice per day) was suggested by a physician I saw in Chicago, Illnois, Keith Block, M.D. (http://www.blockmd.com). Both you can get in health food stores/vitamin stores.

There were two other supplements reccommended to me for this problem, but to cut costs, I only went with the top two suggested (I am on a number of supplements in hopes of keeping away a recurrence).

I believe that Neurontin is the standard treatment for neuropathy (from chemo and from diabetes).

PLEASE let us know about what happens on the 21st.

P.S. Sorry I was a grump on the name change thread! I was only (ok, kind of), teasing you!

Novelafemme · 10-03-2011, 05:35 PM

tease away

i am a notorious ignorer of the rules.

and if i'm not ignoring them i'm most likely just too lazy to read the OP's request!

DapperButch · 10-03-2011, 07:00 PM

Catalina -

I know that Debby told me she uses Aloe Vera with Lidocaine and someone else just mentioned to me that B12 may help, too.

deb_U_taunt · 10-03-2011, 08:29 PM

Quote:

Originally Posted by DapperButch

Really? I will have to try that one, too.

Right now I am on Neurontin, L-Glutamine Powder, and B-6.

And no, not working, but maybe a wee bit.

I am going to try it too.

deb_U_taunt · 10-03-2011, 08:34 PM

Quote:

Originally Posted by DapperButch

Catalina -

I know that Debby told me she uses Aloe Vera with Lidocaine and someone else just mentioned to me that B12 may help, too.

Its actually sold for sunburn relief, but its helped.

Dominique · 10-04-2011, 05:33 AM

Quote:

Originally Posted by DapperButch

Yes, but my neuropathy is not horrid. The Neurontin (Gabapentin) is prescribed by my oncologist (600mg twice a day). The L-Glutamine powder (35-40g) and B-6 (100mg, twice per day)
!

Funny how neuropathy affects us all a little differently. B-6 is interesting. It causes a full body flushing effect on me. I like the B vitamins, for more reasons than just neuropathy.

Ice cold water....no thanks. I prefer warm soaks. Cold metal sets it off for me. I have found a supplement called L-Arginine helps alot. The Gabapentin, made me feel like I was being electrocuted. The tip of my big toe is constantly stinging. Movement helps me the most....nothing like a good workout, power walk.

DapperButch · 10-04-2011, 05:50 AM

Quote:

Originally Posted by Yellow band

Funny how neuropathy affects us all a little differently. B-6 is interesting. It causes a full body flushing effect on me. I like the B vitamins, for more reasons than just neuropathy.

Ice cold water....no thanks. I prefer warm soaks. Cold metal sets it off for me. I have found a supplement called L-Arginine helps alot. The Gabapentin, made me feel like I was being electrocuted. The tip of my big toe is constantly stinging. Movement helps me the most....nothing like a good workout, power walk.

Hi, Yellow band.

I agree with the warm soak idea. Cold is what I am trying to get away from!

Even in the summer, I had to wear socks at all times because it cut down on the pain/numbness. I couldn't wear sandals and that is usually what I wear every day in the summer. So, on the one hand I needed the socks for the neuropathy in my toes, but I was hot b/c I had on socks. My mother got me these socks (can't remember where they are from...some catalog she got in the mail) that were only for the top half of your foot. Since I tend to not wear shoes in the house, it was really useful. Just thought I would mention that for those in hot climates...

Also, I agree with movement as helping.

I really like that this thread is currently busy. It is nice to talk about these things with others who are also experiencing them.

Have a great day everyone!

DapperButch · 10-04-2011, 05:56 AM

Quote:

Originally Posted by Yellow band

Funny how neuropathy affects us all a little differently. B-6 is interesting. It causes a full body flushing effect on me. I like the B vitamins, for more reasons than just neuropathy.

Ice cold water....no thanks. I prefer warm soaks. Cold metal sets it off for me. I have found a supplement called L-Arginine helps alot. The Gabapentin, made me feel like I was being electrocuted. The tip of my big toe is constantly stinging. Movement helps me the most....nothing like a good workout, power walk.

Just a comment on the B Vitamins. I took a B complex to help boost my immune system during chemo. My docs have now told me that FOR ME taking B1, B2 could encourage any present cancer cells to grow, so I had to stop that supplement. I take a multi vitamin that doc manufactures for cancer survivors (which includes Bs) and B6 (and I need to add B12) in addition.

I don't know if the B1 B2 discouragement is based on the type of cancer I had, or what.

Dominique · 10-04-2011, 06:09 AM

[QUOTE=DapperButch;430953]Hi, Yellow band.

I agree with the warm soak idea. Cold is what I am trying to get away from!

I have a pair of insulated rubber dipped gloves I keep near the refidgerator...reaching into there, or the freezer is pain for the rest of the day. I wear wool socks most of the time. I wear the thorlo's...they come in I, II, and III...and they come in all heights too....for example,in the summer, I wear the ones as they allow for maximum wicking, they sweating of the feet, in our case, if not released 100% will make the neuropathy start.....they come in footies in the I....now i'm into the II...and they are ankle height. Winter thorlo III are mid cafe. I also bought the wool sock liners.....again because of wicking. I wear these light weight gloves indoors. Too bad what they look like. It's either the gloves, or I am at a high level of irritable from the pain. I bought the gloves at REI. They were only $20.00. I'm typing in them now. (It's still cool and raining, and I have tingling hands and feet)...I went to pain management to learn about this, as it has been 5 years and is part of my life. They key to living with it is to try to not set it off. TRUE!

QUOTE]

Thanks folks for talking about this.

10-03-2011, 03:35 PM	#288
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 25,407 Times in 4,661 Posts Rep Power: 21474856	Hi everyone I'm back at home after 4 days of visiting Mom at the hospital, running her errands, taking care of things at her house and, unfortunately, having to patch up the damage that my sister did with Mom's friends as well as the doctors and hospital staff. Overall, she's doing a bit better. She's extremely thin....skin and bones really....but she is now on a soft diet and able to keep a little food down. Nothing more than 1/2 a cup at a time, but soup, pudding, half a banana...she even wanted a strawberry milkshake enough to ask for one and drink an inch or two of it. That's huge since nothing has sounded remotely good to her for a long time now. She's completed her TPN training (once I got her a new instructor, rewrote the instructions, and trained them on her learning style....did I mention that I'm pushy?)....but once we got that all right she sailed through and feels comfortable managing it herself. She would like to go home for a week or two and then come here (once the Avastin clears her system and they get to see what this mass is), but that's debatable. The challenge right now is that her blood pressure is staying way too low (80s over 50s), and they are struggling to keep her fluid levels up. In the hospital they can pump her full with IVs but that won't work from home...so they're trying a medication that is supposed to help slow down the travels of fluid to the ostomy (no clue how)....but we have our fingers crossed on that. Now that she can manage the TPN, if they can get the blood pressure and fluid levels right, then she can come here to me to get through the rest of the chemo, then build up strength and weight for a few months....and then comes the belly wash procedure (if she decides to go ahead). Right now, she's not sure. She did accept some counseling and discussion with a wonderful woman who does counseling with cancer patients for hospice....and I'm hopeful that will help her sort out her feelings and choices. Mentally she is absolutely 100% herself, and as fiercely independent as ever...so the choices are hers, and I've committed to backing her up on whatever decision she makes. Thanks so much to everyone for the support. __________________ I'm not tall enough to ride emotional roller coasters

10-03-2011, 07:00 PM	#294
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 26,893 Times in 5,771 Posts Rep Power: 21474858	Catalina - I know that Debby told me she uses Aloe Vera with Lidocaine and someone else just mentioned to me that B12 may help, too. __________________ -Dapper Are you educated or indoctrinated?

09-19-2011, 06:26 PM	#281
deb_U_taunt Senior Member How Do You Identify?: ........ Join Date: May 2011 Location: ....... Posts: 1,748 My Photo Gallery Thanks: 5,324 Thanked 5,260 Times in 1,363 Posts Rep Power: 21474850	Feeling whiney today. I know this is the last time I have to deal with the chemo side effects, but this bone pain is kicking my ass. I am over the pain pills and being trapped in the house. I want a pedicure, too. Damn, I am whiney,

09-22-2011, 12:12 PM	#283
deb_U_taunt Senior Member How Do You Identify?: ........ Join Date: May 2011 Location: ....... Posts: 1,748 My Photo Gallery Thanks: 5,324 Thanked 5,260 Times in 1,363 Posts Rep Power: 21474850	Everyday gets easier. Cleaned up the house a bit and did laundry today!! I have an appt tomorrow to get set up for radiation. Feels like the hardest part is over.

09-23-2011, 04:41 PM	#287
deb_U_taunt Senior Member How Do You Identify?: ........ Join Date: May 2011 Location: ....... Posts: 1,748 My Photo Gallery Thanks: 5,324 Thanked 5,260 Times in 1,363 Posts Rep Power: 21474850	I get a break! I start radiation Oct 10th and finish Nov 18th. Dr said walking will help with the fatigue, YIPPEE back to walking the dog, when the feet stop hurting (she said give that a couple more weeks). I am feeling like I will be getting my life back some!!!!!

10-03-2011, 05:35 PM	#293
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	tease away i am a notorious ignorer of the rules. and if i'm not ignoring them i'm most likely just too lazy to read the OP's request!

10-04-2011, 06:09 AM	#300
Dominique Member How Do You Identify?: Female/Lesbian/half the athlete I used to be Preferred Pronoun?: she/her Relationship Status: Dates Join Date: Nov 2009 Location: So proud to be a Pittsburgher Posts: 1,484 My Photo Gallery Thanks: 2,645 Thanked 3,735 Times in 1,168 Posts Rep Power: 21474852	[QUOTE=DapperButch;430953]Hi, Yellow band. I agree with the warm soak idea. Cold is what I am trying to get away from! I have a pair of insulated rubber dipped gloves I keep near the refidgerator...reaching into there, or the freezer is pain for the rest of the day. I wear wool socks most of the time. I wear the thorlo's...they come in I, II, and III...and they come in all heights too....for example,in the summer, I wear the ones as they allow for maximum wicking, they sweating of the feet, in our case, if not released 100% will make the neuropathy start.....they come in footies in the I....now i'm into the II...and they are ankle height. Winter thorlo III are mid cafe. I also bought the wool sock liners.....again because of wicking. I wear these light weight gloves indoors. Too bad what they look like. It's either the gloves, or I am at a high level of irritable from the pain. I bought the gloves at REI. They were only $20.00. I'm typing in them now. (It's still cool and raining, and I have tingling hands and feet)...I went to pain management to learn about this, as it has been 5 years and is part of my life. They key to living with it is to try to not set it off. TRUE! QUOTE] Thanks folks for talking about this.