Heavenleah,
Bless you, hun. Get all comfy. Got anyone to help you out there?

Hey Heavenleah,

The American Cancer Society chapter in our area has volunteers that help with errand running, house stuff, etc. for folks undergoing chemo, radiation, etc.

I felt a little odd about it, since I'm able to take care of my Mom, but they assured me that they were still happy to help even though I'm her caregiver. I've opted not to use the volunteers' time so that they can use it to help folks who are alone and really need it.....but I recommend giving them a call, or checking out their website.

Sometimes, just having someone run to the store, or toss in a load of laundry, can be a real help.

Hugs,
Jo

Hello all! My Mom is doing really well. Amazingly so. She had a radiation treatment last week. She had no side effects and it was not too hard for her. She has gained 10 pounds since she started chemotherapy.

This week she had a fever a couple of days but her white cell count was ok. She in on antibiotics and seems to be ok with that. They are tapering her off the steroids slowly. Next week she will start her fourth round of chemotherapy.

She got two super cute wigs and that has made her very happy. They look great!

HeavenleAngel I hope you are feeling well and will call the cancer center. I have started volunteering with seniors and I get so much pleasure from helping. Anyone who is volunteering wants to help and you will be doing them a favor by allowing them to help you!

Be well everyone.

Hi Heavenlea,

Sorry you're feeling so bad. My mom struggles with dehydration and it was a major issue. We found that adding Pedialyte did her a world of good. Right now we use the unflavored variety and mix it half and half with juice a couple times a day. It's worth a try. :)

Thanks for the suggestion. I naively started guzzling Chrystal Lite, but the dr told me any kind of beverages that have "lite" in the name will just run right through me and NOT to drink them. Who knew, right? I have started eating ice chips, too. It's all water..lol, and popsickles. I hope your Mom feels better soon! You are very special for caring for her. Wish I could say the same about my family.

Heavenleaangel,

There have been a number of studies done that have shown that even the smallest amount of exercise helps with fatigue during chemo. Even just taking a 5-10 minute, slow walk will make a difference. Built up from there.

Ok, so I didn't follow that advice consistently myself during chemo, but I thought I would let you know what I have read in more than one place.

Don't forget that Gatorade is great for dehydration. It has the electrolytes to get you back into balance (you lose this when you are dehydrated). If you start to lose weight and have a hard time not getting it under control, choose the Pedialyte, for certain. Or do Gatorade for dehydration and protein shakes for calories/health.

Also, drinking a lot of water is important after chemo. It flushes the chemo out of your system. You will feel less shitty the sooner you get that stuff out.

Pedialyte pops are good too. Especially if the chemotherapy is causing mouth sores. My Mom is also rinsing with baking soda twice a day and that has helped the mouth sores this time around.

Yes my Mom has the prescription but she has not filled it yet. Magic Mouthwash I think it is called. She likes popsicles so that works for her. I don't know about the BioTene. I will have to get that for her. She has a bridge that she takes out at night and that was really irritating her mouth. She left it in at night and that helped but that also annoyed her! So now she is back to taking it out again. Thanks for the info Clay and I hope you are feeling well.

You are so very welcome, Julieis...and yes, it IS called Magic Mouthwash...I am fine....thanks for asking...give mom a hug...have a great weekend...Clay

Julie, just to let you know "Magic Mouthwash" comes in cherry and regular. The pharmacist actually mixes up the product right there. My pharmacist said cherry is the automatic choice, so she had to specifically order the plain for me. I did not want the cherry b/c the way I used the mouth wash was to take a mouthful of it and "hold it" over the sore in my mouth until it was numbed a few minutes before I ate. It only somewhat worked, but it was a way I could eat. I didn't want the cherry flavor b/c it effected the taste of my food. The product really only worked for about 10 minutes.

My chemo was one week on, one week off. The week off was when I had the mouth sores, so I hardly ate. The week on, I didn't have mouth sores, so I ate a lot, in order to bring my weight back up. I did this for 6 months. I actually had to miss work sometimes b/c it would be extremely painful to even talk (I meet with people all day = a lot of talking!).

I was told the baking soda rinse would not help after the mouth sores appeared, but was supposed to keep them from occurring (?). I am glad it helps your mom though, Julie.

Magic mouthwash is supposed to soothe, but unfortunately, not eradicate the mouth sores. My oncologist told me there was nothing else out there and then I saw in "cure" magazine an advertised new product. I suggested to my oncologist that they request free samples from the company, and they did. By the time they got it in, I had finished my last chemo and the mouth sores had gone away. Subsequently, I couldn't be their "guinea pig" for the product as they had hoped. lol I'm sorry that I don't remember the name of the product and it was too new to get up on google. It may be there now (this would have been 9 months ago).

Ok, so I just remembered they gave me a sample of a different product that was also new out. It burned my mouth. They saw the ingredients included alcohol, so they literally tossed it into the trash (alcohol was the reason for the burning, so it is pretty stupid they put it in there).

It is so funny how memories continue to come back here and there about my time in the hospital and memories about chemo. It is weird, as you would think I would remember it all by now.

For all of you caregivers and for people currently fighting cancer, look into getting Cure magazine (tommi put a link in this thread a ways back). It is an interesting and useful read and is free to the two above named groups.

Take care, everyone!

cuz we all can use a laugh
 

good one deb..ty for sharing
 

Great online support network: http://csn.cancer.org/

I looked and couldn't find a clip like that. :(

Hi All,

Just got back from NYC in the wee hours this morning. We spent the bulk of Friday at the NYU Cancer Center with my sister as she went through chemo #4. So different from anything we have experienced. She is getting the R-CHOP drugs for her lymphoma and really hasn't had many of the same side effects. Some hair loss, but she still has her eyebrows and eyelashes. She got up Saturday morning and taught her usual two hour yoga class! Then she met us Sunday for brunch and also walked the 1.5 mile long high line walk way AND BACK! She's pretty amazing! Just a little update on her and to say thanks again for all the support!! :bunchflowers:

THAT is fantastic news, Novela..and You go SISTER!!!! Awesome...hugs to you..Clay

High 5 and High hopes.
 

Positively amazing, and positive for her. Hope and healing go hand in hand.

Sending hopeful wishes and strength to all.

UPDATE on Me.....
 

My friend you have had a double major surgery so I would think it takes a lot out of your body to heal it self,we both know it dosent happen over night.Carry on with what you are doing,it will all work out.

I spent the better portion of my day reading every single post in this thread. I have laughed, cried, empathized, grieved and have been touched by each and every one of you.

I'm a member of the club none of us ever wanted to join too. I was diagnosed in 2009 with Breast Cancer. Lost the boobs, did chemo, did rads, got new foobs, lost those, got another set of foobs and lost again. Apparently boobs don't like me. Fine, cuz I don't really like them either too much right now. It's going to be an adjustment since nearly every shirt I own was designed to show off my lovely bit of cleavage but what can I do but roll with it.

I don't have time to say much more at the moment but will try to pop in later for a more proper introduction. Nurse will be here in a few minutes to change the dressing on my PICC line, kids are wanting dinner etc.. but I did want to say that I think you are all AMAZING! All of you supporters, caregivers, loved ones and those battling the beast, stay strong.. and as Clay so wonderfully said.. We are all Brave Warriors!

Vonni,

Thanks for joining the thread. I'm glad you are here.

Welcome to the thread Vonni. :rrose: I've received tremendous support and advice here....and hope it serves you as well.
Wishing you all the best...

Tks bud,no matter how or where we are in this life we all are rowing the same boat,just in a diffrent way.Dont forget we have to meet up in a town in Arkansaw this fall,by time all of the planet folks meet and greet then just plain get to know each other...the place wont be the same...nor will we.

Hello all,

It's been awhile since I've posted about mom, but not much has changed. We're in a holding pattern of sorts. She is still doing the (supposedly reduced) chemo, but is finding that it makes her just as sick. The oncologist and surgeon disagree about whether she should continue it or not...and she is leaning towards not.

Basically, she feels fine when not on chemo...very sick when on it...and no one knows whether chemo actually will slow the advance of these punctate lesions or not. In a nutshell...her choice...does she want to feel nauseous and exhausted and take a potential chance at increased time....or feel like herself and take a potential chance at reduced time.

All she knows for sure right now is that she really wants to be home on her own place. I understand that, as it's always been her closest connection and the most important thing in her life. With the mild winter, weather isn't the issue we had anticipated...and she's eating and drinking well, not to mention infinitely stronger and healthier than when she arrived in early December. So....she's going home, a week from Saturday. She'll still have visiting nurse and home health aid a couple times a week, and her best friend will by my spy. We have agreed that if she starts to deteriorate at all, or by next winter at least, she will come back here to Florida again.

Honestly, I'm relieved. The stress of being a caregiver is enormous, exhausting and difficult...even if the previous relationship is good. When the previous relationship is rocky, and the recipient of care is a narcissist....well....suffice to say that I can use the break myself.

I also struggle....so many people want to tell me that I'm a good daughter, or so compassionate and giving, or so brave....and I'm not. Believe me....I'm here to tell you. I am doing this because I must....because I have to live with myself and look in the mirror each day for the rest of my life. I joke about "damn ethics"....but that's what it is....the recognition that the right thing needs to be done even if I hate doing it, even if it exhausts me, and even as I grit my teeth and bite my tongue.

I'm never had cancer myself, but I can only imagine that it is the same for many cancer patients....who get through it one step at a time simply because they must. :rrose:

Hugs,
Jo

Jo, thanks for updating us on your mom. It sounds like her being down here was a very, very good thing for her. It really stabilized her and that is great. It does sound like she really is at a crossroads in terms of her decision. It would be a tough call.

I know exactly what you mean with the whole "brave" part not fitting for you. I actually was going to respond to Clay's post last night <waving at Clay> to tell her that I would prefer she refrain from calling me a "brave warrior". That isn't how I identify. I am just a guy who got cancer and didn't want to die so hy got treatment. Being called a "brave warrior" makes me quite uncomfortable.

So, Clay, I support you in calling yourself whatever, including brave warrior, if that is how you identify, but I am just a guy who did what had to be done. Please stop calling me something I do not identify with, however, please know I appreciate the sentiment. Thanks.

Hello all,

Probably time for another update, but please skip this one if you don't want to hear bad news.

We just got the results of my mother's last PET scan and the cancer has metastisized (or however you spell that freakin word) to her liver. They are calling it hyper-metabolic....which basically means growing like a son of a bitch.

Also, several of the punctate lesions have now activated on the outside of her remaining small intestine.

They have said they are "willing to try" very aggressive chemo....but the mild chemo she is on is already making her more sick than she can tolerate, and her weight is already dropping again. The only time she felt well, and was gaining weight, is when she had a break from chemo....so she expects that the very aggressive version would be absolutely intolerable for her.

She has decided to return home as planned on Saturday, to refuse chemo, and to begin working with hospice. She would prefer to live a shorter time, and not feel so sick...and most definitely not to die either in a hospital, or in front of my son.

She has already started getting her affairs in order.

Cancer sucks.

Oh, gosh, Jo. I am so very, very sorry. I don't even know what you say. Please know I am here if you want to talk.

Understanding.
 

Oh damn Jo, I'm so sorry. I can't think of anything helpful to say other than I will keep you and your Mom in my prayers. We are all here for you.

JustJo, this is always hard news. But it looks like your mom realizes that quality of life is important to her and those around her. We will keep her in prayer...and you as well.

Good morning. I just had the scare of my life and thought I would share it here. Sorry for the long ramble.


Since the age of 40, I have gone every year for a mammogram. It had become routine, something I just did.


10 years ago, my oldest sister was diagnosed with breast cancer; she did the chemo and mastectomy and is a 10 year survivor and going strong.


Last year my youngest sister was diagnosed with breast cancer and is doing well.



Having done this 13 times and having some not so very sensitive technicians, last year I said to the tech “Good morning, are you having a good day?” She looked at me a bit puzzled and said yes. I said “Great, because the last thing I want is someone squishing my boob that is having a bad day!” She laughed and although uncomfortable, it went well.


Last week I went for my routine mammogram. I had the same conversion with the tech and again, it went well. My daughter had come by Monday to pick up her mail and it was a good day. Later that evening, I got a call from her telling me she got my letter from the radiologist. As she read it I stopped hearing a word she was saying after I heard “requiring more testing.” I cried myself to sleep that night.


Tuesday, yes, Valentine’s day, I called my doctor and instructed to call the radiologist for another appointment, I shouldn’t need another prescription. I called the center and was told the next date would be Feb 29…..That was 15 days away! I said to the lady, I have had 2 sisters with breast cancer and that seems too long can they call me if there is a cancellation and get in sooner? She said she is unable to do that, but she could transfer me to the local office and I could check with them.


She transferred me to the actual place I had my testing. I gave my name and other information. She said “Can you come in at 1pm today?” My heart just about stopped as I said yes. Even though I got an early time, the immediate response was of urgency it seemed and I was terrified.


I arrived early to the center, and waited to be called. I heard my name and through those doors I went. I had my little conversation with the tech and she laughed. She took 1 x-ray of my right breast and 3 of the left. She took me to a waiting room, still in the gown in case there needed to be more x-rays after the doctor read them. As I sat in the waiting room, there was a tv playing an infomercial on Tomosynthesis 3D imaging. After what seemed forever, the tech came and got me for another x-ray….omgoodness. I asked about the Tomo and she said that is what we are doing. She further explained that it is a new technology and insurance companies are not paying for it yet, but the Doctor here said to go ahead and do it.



Back to the room I went and waited. The tech finally came back and said I could get dressed and the doctor would be in to talk to me……..more waiting.


Finally he arrived and said that everything was fine and negative. Shadows of the 2d were not there on the 3d. A huge sigh of relief!


I suggest that if the new Tomosynthesis 3D imaging is available in your area, it is well worth the out of pocket expensive to alleviate false positive reading and going through what I experienced! Hopefully, the insurance companies will start covering this new machine…. it still squishes the boob, but it takes 52 shots in a pass so the doctor is able to see more!


OSB

Sending everyone well wishes

JustJo so sorry for this news my prayers are with you and your family

OS glad to hear your news was good, adding you and your family to my prayers

Clay I have a feeling everything will be good for you, you beat it once and if need be you can do it again!

Take care everyone keep your spirits high and know there are folks that keep you in their thoughts and prayers and support you.