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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,
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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. :)
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Debby's Rainbow
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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:
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 |
You are amazing..HUGS and LOVE to you and your mom
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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!!!!!
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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. :rrose: |
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Right now I am on Neurontin, L-Glutamine Powder, and B-6. And no, not working, but maybe a wee bit. |
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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. |
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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! |
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!
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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. |
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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. |
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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! |
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I don't know if the B1 B2 discouragement is based on the type of cancer I had, or what. |
[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. |
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