|
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,
|
Quote:
|
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. :)
http://4.bp.blogspot.com/_cLjM5_wo4f...he_rainbow.gif |
Debby's Rainbow
Quote:
|
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
Quote:
|
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!!!!!
|
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: |
Quote:
|
Quote:
Right now I am on Neurontin, L-Glutamine Powder, and B-6. And no, not working, but maybe a wee bit. |
Quote:
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. |
Quote:
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!
|
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. |
Quote:
|
Quote:
|
Quote:
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. |
Quote:
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! |
Quote:
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. |
the cold foot bath was something we read on the internet :) and thought it sounded fairly accurate. and it actually helped!
|
Quote:
I'm certainly not saying it doesn't work....it doesn't work for me. Cold accelerates neurapoathy for ME! Even if I am pretty warm, i/e like summer time warm...and walk into a/c....that will set it off. Dapper was saying cold sets his off too. It seems to be different for every one. |
Quote:
|
Quote:
My Dr. suggested I wear therma-care heat wraps on my ankles if I am going to be outside. This will call for blood from your heart, and is such a low dose request, it will not burn us.....it works too. (expensive remedy). |
Quote:
|
Quote:
|
Tomorrow I start daily radiation for 6 weeks. I keep hearing its not so bad, it just makes ya tired. I am still nervous.
|
Quote:
{{{Debby}}} No radiation here but my sister and bf both had it as part of their thyroid treatment protocols. We are having dinner with a chemo buddy on Saturday and she did radiation before starting chemo and said she really didn't notice any side effects at all. I will say a prayer for you that all goes well. <3 |
Quote:
Wanted to come in and give you all an update.... Mom is home (I know....surprise!), with lots of help including a visiting nurse daily, a CNA/home aide for 3 or 4 hours and a friend spending most of the rest of the time. She's glad to be out of the hospital after spending virtually the whole summer there...and even though it's temporary. She's still waiting out the timeframe for the Avastin to clear her system...once it does they'll go look and see what this other mass is and make a determination about next steps. If no other procedure is needed, she'll come down to me in Florida at that point. If another surgery is needed, then she'll be back in the hospital for that and until she recovers. They cut her loose since she was able to demonstrate the ability to manage her own TPN (which is in a backpack arrangement), and they're monitoring her blood pressure and hydration very closely. Her weight is up to 112....still very thin, but much better than the 96 in her clothes that got her admitted last time. And she's eating....all soft foods and in small quantities....but she's handling soups, yogurt, cooked cereals, soft fruit, etc. In the meantime, chemo continues every 2 weeks, and will through the rest of the year. She's decided to sell her house, and is home talking to realtors and boxing up things she wants to send to me, my sister and our kids. I'm glad she's come to this herself rather than being hustled into it by my sister....and she feels good about it rather than pressured and rushed. Her decision, come to with counseling....is that the remaining item on her "bucket list" is that she's always wanted to live in NYC, have a little apartment, and enjoy all of the cultural "stuff" that she enjoys so much when we've been there for short periods. So....assuming she recovers....she may transform herself into a snow bird, spending winters with me and the rest of the year in a short term furnished rental in NYC. It feels right to her, so that's the plan. |
JustJo,
This is good news. So glad she is doing well enough to be home, and to move on in her own terms. I am so glad she is able to talk about the future with you. |
Surgery update!
So my surgery has been moved from next Friday (the 21st) to tomorrow at 3:30. I've been in so much pain and have lost so much weight that my doctor doesn't want to wait any longer. I'm off to begin the dreaded bowl-prep. Fun-Fun! |
Quote:
The multi that I am taking is manufactured by the doc I saw in Chicago. After blood work they determine dosage. I thought it was a "one fits all" multi vitamin (or "one fits all cancer survivors"), but it is not. I would ask your oncologist if he/she has any thoughts. Quote:
Jo - thank you for the update. It sounds like several positive things are happening (how mom is feeling, her weight, coming to conclusion about the house). You must be feeling some relief. |
Quote:
I meant to come back to this post. Yellow band, do you happen to remember the name of the REI gloves? I have a hard time typing in gloves and I am not looking forward to struggling to type at work again this winter. |
Quote:
I hope this helps you. This has saved me! |
the hospital just called and moved my surgery up again! now it's at 2pm!
i'm sneaking in a smallish cup of coffee and then taking the kiddos to school. send good vibes and healing energy this way and i'll see you all soon. :) |
Hi Friends!
Got the path report back today and it isn't good. But....I have faith and am gonna take the bull by the horns and tackle this head on. :) I'm also gonna take a break from the online world for a while, so if you don't hear from me please feel free to reach me via email: landphair@pharmacy.arizona.edu so long for now and BE WELL, everyone!!! |
Quote:
Thank you for posting your email so that we can contact you. |
Check ins!
Debby? Catalinarose (I know she may not be here)? JustJo?
Everyone else? Update for me: Weather is getting colder, but hands do not seem to be getting worse in direct proportion. I hope this means that the neuropathy is abating. In my feet, no real change, unfortunately. I continue with the supplements I started taking after the testing I did in Chicago, have done pretty good sticking to a vegan diet, but have done crappy with exercise follow through. I have big sleep problems (falling asleep, even with pills) and find that if I exercise in the morning I drag all day (after 3 weeks in a row of exercise this never did abate..which surprised me), and then after work I am of course wiped out from little sleep ...around 10pm I feel wide awake and can't sleep, and then the process starts all over again. This has been a problem my whole life and I will never have an evening/night job, so....I dunno. I still have a significant amount of fatigue for being off of chemo for 6 months now, so I don't know what that is about. Granted, I have no information that tells me I shouldn't still be tired, but it doesn't make sense to me that I would still be tired. I need to call my oncologist's office because I either missed an appointment or didn't call to schedule like I was supposed to, as I know it has been 3 months since I have seen her. Also, I do believe that I am due for a CAT scan. |
Quote:
I'd love to see you type the neuropathy is gone! |
Hey everyone :)
Sorry I haven't been in for awhile. Feels like we're in a holding pattern. My mom is home at her own house (now sans car thanks to my sister), which is probably good as she would be driving and shouldn't be at this point. She has a visiting nurse daily, an aide who comes every other day for a couple hours, and a friend who spends a good chunk of each day with her. Her weight has dropped a little since leaving the hospital, and she struggles to eat and drink at all. Some days better than others...but too frequently I hear that she managed half a carton of yogurt for the day. She was eating better in the hospital, even though she complained about the quality of the food. She's on the TPN 24 hours a day...so that's enough food and liquid to sustain her life, but not to thrive. She really does need to eat and drink as well. The timeframe for the Avastin clearing her system has passed and they are now talking about the plan for seeing what the rest of the mass is. What they find will determine whether she gets on a plane to come here, or has to stay there for another procedure. She's 2/3 of the way through her chemo...and is now describing it as a race....can she eat and drink enough when she's sick and exhausted and everything tastes like metal to be strong enough to get through it? She has the expectation that, once the chemo is over, she will be able to eat and drink and have no trouble. According to the doctor, that may not be the case...but I'm glad she believes that. It can't hurt. I know she's happier to be out of the hospital and at her own house, but I'm also worried about the feeling she frequently describes....that she now understands how people long ago just took to their beds, turned their face to the wall, refused to eat or drink, and died. She says she feels like that herself most days. It's hard to hear. |
| All times are GMT -6. The time now is 01:20 AM. |
ButchFemmePlanet.com
All information copyright of BFP 2018