Cancer Support and Caregivers Who Are Trail Blazers!

[DapperButch]

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.

[Dominique]

Originally Posted by DapperButch

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.
.

Good morning Dapper...were you able to get those gloves at REI?

I'd love to see you type the neuropathy is gone!

[JustJo]

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.

[deb_U_taunt]

Glad to hear she is referring it to a race. Plastic utensils helped me with the metal taste. It was a couple weeks after chemo, when food started tasting better. I ate a LOT of watermelon during chemo. Dairy didn't taste good to me during chemo and I usually eat yogurt everyday.
There were days I felt the same way. Cancer sucks and its normal to feel that way somedays. Has her Dr suggested an antidepressant?

Originally Posted by JustJo

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.

[deb_U_taunt]

My update:

Half way through radiation, so have 3 weeks left. I am feeling good. I am getting some energy back. Been swimming and walking the dog, again. My feet still hurt, but seem to be getting better. Adjusting to living alone. Surgeon and Onocologist submitted to my insurance to approve a double mastectomy. This has been a hard one for me to accept. I am hoping insurance approves a reconstruction, too.

[DapperButch]

Originally Posted by Debby

My update:

Half way through radiation, so have 3 weeks left. I am feeling good. I am getting some energy back. Been swimming and walking the dog, again. My feet still hurt, but seem to be getting better. Adjusting to living alone. Surgeon and Onocologist submitted to my insurance to approve a double mastectomy. This has been a hard one for me to accept. I am hoping insurance approves a reconstruction, too.

Hi, Debby. I am an asshole. I just realized I never responded to this post after asking for information! Instead I jumped on the whole dairy thing!

I am glad to hear that things are going so well. I was worried that the reason that we hadn't heard anything from you was b/c you were very worn out. That is great to hear that you have been swimming and walking the dog!

Glad the feet are getting better, too!

I did not realize that you have to get a double mastectomy. I'm sorry.

I would think that mastectomy approval means automatic reconstruction approval?

[deb_U_taunt]

Originally Posted by DapperButch

Hi, Debby. I am an asshole. I just realized I never responded to this post after asking for information! Instead I jumped on the whole dairy thing!

I am glad to hear that things are going so well. I was worried that the reason that we hadn't heard anything from you was b/c you were very worn out. That is great to hear that you have been swimming and walking the dog!

Glad the feet are getting better, too!

I did not realize that you have to get a double mastectomy. I'm sorry.

I would think that mastectomy approval means automatic reconstruction approval?

Dapper,

You are NOT an asshole.
I am starting to get wiped out and radiation burns this week. Gonna slow me down a bit. No more swimming until the burns heal.
Doesn't mean the recontruction will be approved. Shame to have to battle insurance and cancer at the same time.

Debby

[Tommi]

Originally Posted by Debby

My update:

Half way through radiation, so have 3 weeks left. I am feeling good. I am getting some energy back. Been swimming and walking the dog, again. My feet still hurt, but seem to be getting better. Adjusting to living alone. Surgeon and Onocologist submitted to my insurance to approve a double mastectomy. This has been a hard one for me to accept. I am hoping insurance approves a reconstruction, too.

Hi you. Glad you are oun N about. Good news, the pending surgery will remove the bad gunky that may be hiding there, and .....the reconstruction will give you a chance to pick what cup size u want to b.

okay, it's not quite that easy, but I know thousands of success stories over the years that I have been active in this field. .

Living alone was tougher than cancer surgery and recovery over 7 years ago. We broke up in Oct. I was diagnosed the next May..Life was drive thru's, eating off paper plates, struggling to choose dish patterns and shelf paper... Bachelorhood was a big surprise at every meal , and ...the decisions on which appliances I needed ..ugh...

[deb_U_taunt]

Hi Tommi,

Might be great to be a smaller cup size, too. Clothes will fit better and it will be easier on my back.
Living alone has been an adjustment, but much better than living in a bad relationship.

Debby

Originally Posted by Tommi

Hi you. Glad you are oun N about. Good news, the pending surgery will remove the bad gunky that may be hiding there, and .....the reconstruction will give you a chance to pick what cup size u want to b.

okay, it's not quite that easy, but I know thousands of success stories over the years that I have been active in this field. .

Living alone was tougher than cancer surgery and recovery over 7 years ago. We broke up in Oct. I was diagnosed the next May..Life was drive thru's, eating off paper plates, struggling to choose dish patterns and shelf paper... Bachelorhood was a big surprise at every meal , and ...the decisions on which appliances I needed ..ugh...

[DapperButch]

Hello, folks!

Originally Posted by JustJo

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.


Okay, so I feel compelled to give my "dairy speech" here. I hope no one minds (Debby I see you eat yogurt too), but it will gnaw at me if I don't share this information. And this speech is for everyone, not just for those currently fighting cancer and cancer survivors

My understanding is that milk protein is 80% casein, which accelerates the growth of tumors and metastatis. The reality is that even those who have never had cancer have cancer cells in their body. Obviously, those of us who have had cancer probably have more cancer cells/mutated cells in our body than non survivors, so we really need to watch this.

One thing we can do to protect ourselves from getting cancer again is to eat things that either keep mutated cells from multiplying or eat things that actually can reduce growth of any tumors.

Avoiding dairy is one of those things.

As an aside, the 20% protein that is left in the milk is whey protein. Which just happens to inhibit cancer growth.

Jo, if your mom is looking for calories that are easy to eat, suggest she drink whey isolate protein drinks and get away from yogurt altogether. And everyone else consider a life without dairy/pass on dairy when you can.

/sermon


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 saw my life as being one week race and one week off from race when it came to eating (chemo was on one week, off one week).

I took advantage of desiring or just not minding eating during the week I was NOT on chemo and then let myself slide on the off weeks. That was at first. The last couple of months I had mouth sores on the off weeks, so it was really hard. The weeks that I didn't have the mouth sores and could actually eat I felt sick, so I really had to force myself to eat. There were times I couldn't even talk the mouth sores were so bad. Overall though, mostly due to being younger, I didn't have weight loss issues with my chemo.

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.

I can imagine how hard that must be to hear. I can also remember feeling something very similar. I remember being very impressed that there are people out there who have chronic, long term debilitating illnesses and choose to remain alive. That whole way of thinking feel so removed now.

------------------

[deb_U_taunt]

Okay, saying this with my mommy voice "make the appt!"

I hope it means your neuropathy is abating, too. Mine is feeling a bit better since starting neurontin and swimming. The swimming in the evenings has helped me sleep, too.

Originally Posted by DapperButch

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.

[DapperButch]

Originally Posted by Debby

Okay, saying this with my mommy voice "make the appt!"

I go on Wednesday.

P.S. Please note the above post. You are the official "hand holderer" of the thread. We voted on it last week.