Cancer Support and Caregivers Who Are Trail Blazers!

[Tommi]

Originally Posted by JustJo

Hi Dapper,

I spent all yesterday evening and too much of last night sitting with those same thoughts, and they're on my list for both her and the doctor. I know part of her would like to be here...but I don't want to wipe her out getting her here and then find out she can't stay at home anyway.

My sister is gone....was on a flight at 6 a.m., after blowing up my mother's car (driving an old car like an idiot and blew the head gasket) and starting a huge fight among the circle of friends that has been caring for mom so well....and then dragging mom into it to resolve it. Insanity.

I need to have a long chat with the oncologist and the care coordinator, and then with mom. Rooster and I may be on a plane heading that way soon after all.

In happier news.....Congratulations Debby!!!

I'll bet that was a wonderful feeling....and a huge milestone reached. Bravo!

You can find so much more out in person, and , they can see a rational family member. I know this is tough to deal with, but there are some hills ahead.

Has she filled out a living will, Advance Directives effective in her state, and clear as to her wishes if she becomes too ill to make medical decisions. That is something I learned is vitally important when a friend of mine needed it in 24 hours, and did not have it done.


Expedia, Travelocity, Orbitz, . Don't know how long the drive would be, versus airfare X2, but it is an option.

[JustJo]

Originally Posted by Tommi

You can find so much more out in person, and , they can see a rational family member. I know this is tough to deal with, but there are some hills ahead.

Has she filled out a living will, Advance Directives effective in her state, and clear as to her wishes if she becomes too ill to make medical decisions. That is something I learned is vitally important when a friend of mine needed it in 24 hours, and did not have it done.


Expedia, Travelocity, Orbitz, . Don't know how long the drive would be, versus airfare X2, but it is an option.

Flights are booked....we're on a plane Wednesday 9/28...going up for 4 days so my son will only miss one day of school.

And, thank you Tommi, I have a list of things to go over with her...those items being on top.

When I spoke to her yesterday she sounded exhausted, and also clearly had no memory of talking to me just the day before and relaying the story of how she ended up back in the hospital.

Her version is very different from my sister's...not surprisingly...and maintains that she was fine and it was everyone else who freaked out.

I just need to get up there and see with my own eyes, talk to the doctor face to face, and figure out what the heck is going on.

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.

I still want to kick my sister's ass though.

[deb_U_taunt]

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,

[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....

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]

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

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]

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]

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]

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]

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.