Cancer Support and Caregivers Who Are Trail Blazers!

[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.

[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]

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.

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

[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?

[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]

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

[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...

[Novelafemme]

Oh dear, Debby...radiation burns...do I even want to know? {{{hugs}}} to you on all fronts!

I have to agree with the dairy issue Dapper speaks about. I have a very strong oppionion when it comes to dietary issues, so I'll keep my mouth shut. But if anyone wants to hear, feel free to contact me!

I am doing pretty good! Thanks for asking Dapper! I have another procedure coming up on the 21st and then I hope to be on the mend. Sorry if I am vague about all of the details. I tend to be an open book about almost everything in my life except for health issues. My mother was "dying" from age 27 on, so it touches a nerve in me to discuss my own health. I'd rather think there is nothing can keep me down for long!

Thinking of you all!

[DapperButch]

Originally Posted by CatalinaRose

Oh dear, Debby...radiation burns...do I even want to know? {{{hugs}}} to you on all fronts!

I have to agree with the dairy issue Dapper speaks about. I have a very strong oppionion when it comes to dietary issues, so I'll keep my mouth shut. But if anyone wants to hear, feel free to contact me!

I am doing pretty good! Thanks for asking Dapper! I have another procedure coming up on the 21st and then I hope to be on the mend. Sorry if I am vague about all of the details. I tend to be an open book about almost everything in my life except for health issues. My mother was "dying" from age 27 on, so it touches a nerve in me to discuss my own health. I'd rather think there is nothing can keep me down for long!

Thinking of you all!

Hey, Catalina. I for one would like it very much if you posted your thoughts on dairy and diet here. I am a strong believer that the reason I ended up with cancer was my dietary choices. I doubt that anyone here is not open to hearing about nutrition, especially as it relates to lower incidents of cancer! I am sure many of us here (including those that just read and do not write), think about recurrence a great deal. I would love to hear your thoughts!

I hope that the 21st goes well!

<--- get well flowers

[clay]

Let me say that each and every one of YOU are such Brave Warriors! I have been in and out of this thread at times, since joining the Planet in May this year! I came then as someone who had been a caregiver.
Recently I was diagnosed with Endometrial Cancer...found on biopsy of uterus after an abnormal US showed some thickening of one side of uterine wall. My gynecologist feels this is in the earliest of stages and I am given a prognosis of 95% survival rate! I will take those odds!
I was referred to a Gynecological Oncologist in a town an hr. from me...at a cancer treatment center. This Friday is my first appointment...11/11/11..cool huh? I had my (yearly) mammo done last Friday to take results to her..and am having a colonoscopy done tomorrow with anesthesia. The Oncologist wanted those results also.
I am okay with facing all of this..and I am in a very positive frame of mind. I am going to fight this..all the way. My battle isn't as tough as most of you have faced...and I am in awe of each and every one of you. Some are facing this battle alone..some are with someone to face it with them..I am in that camp of no one to face this with me. For me, that is hard...but I have to trudge on...you know.
I have days of being afraid, of being so alone, and feeling so lonely...I try to stay busy, occupy my mind..but my heart..it is just not satisfied..it wants what it wants...you know? I know there are schools of thought..and I have thought them all..I just would wish for someone to hold my hand, tel me I am going to be okay, to care about me..and to be by my side...
Sorry I am crying and losing thoughts...I will come back later..
Thanks all you Brave Warriors..you make ME want to be just like YOU! I heart you all...Clay

[DapperButch]

Originally Posted by claybaby

..I just would wish for someone to hold my hand, tel me I am going to be okay, to care about me..and to be by my side...

You ARE going to be okay, WE care about you, and WE are on your side! Oh, and we will send Debby over to hold your hand!

Number one order of business....report back to us on the 11th. Not the 12th, the 11th!

I hope you have someone who can go with you on the 11th. Two sets of ears are better than one. Write your questions down before you go, even if you don't think that you could possibly forget any of your questions. Take notes.

And also....sorry about the prep you are going through tonight!
(hoping to make you smile)

[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.

[Novelafemme]

Originally Posted by claybaby

Let me say that each and every one of YOU are such Brave Warriors! I have been in and out of this thread at times, since joining the Planet in May this year! I came then as someone who had been a caregiver.
Recently I was diagnosed with Endometrial Cancer...found on biopsy of uterus after an abnormal US showed some thickening of one side of uterine wall. My gynecologist feels this is in the earliest of stages and I am given a prognosis of 95% survival rate! I will take those odds!
I was referred to a Gynecological Oncologist in a town an hr. from me...at a cancer treatment center. This Friday is my first appointment...11/11/11..cool huh? I had my (yearly) mammo done last Friday to take results to her..and am having a colonoscopy done tomorrow with anesthesia. The Oncologist wanted those results also.
I am okay with facing all of this..and I am in a very positive frame of mind. I am going to fight this..all the way. My battle isn't as tough as most of you have faced...and I am in awe of each and every one of you. Some are facing this battle alone..some are with someone to face it with them..I am in that camp of no one to face this with me. For me, that is hard...but I have to trudge on...you know.
I have days of being afraid, of being so alone, and feeling so lonely...I try to stay busy, occupy my mind..but my heart..it is just not satisfied..it wants what it wants...you know? I know there are schools of thought..and I have thought them all..I just would wish for someone to hold my hand, tel me I am going to be okay, to care about me..and to be by my side...
Sorry I am crying and losing thoughts...I will come back later..
Thanks all you Brave Warriors..you make ME want to be just like YOU! I heart you all...Clay

{{{{{{{{Clay}}}}}}}}

Dear one, you and I are in the EXACT same boat. My jaw almost hit the floor while reading your post. Seriously, I have the jitters right now!! I also go in for a colonoscopy soon...that is the next procedure I was referring to in my earlier post. I had surgery last month and a carcinoma was found connecting my ruptured appendix to my colon. This is following a hysterectomy and the removal of my ovaries and fallopian tubes (a total of three procedures/surgeries.) It has been a crazy ride since late April/early May of this year.

I am so sorry you feel alone, but PLEASE know you are not!! Even though we are a small group, we are pretty darned supportive and TOUGH and we can help carry you through if you'll let us. I am the absolute worst when it comes to asking for and accepting help...even to the point of feeling the need to leave when things get rough. But I am working on that.

Feel free to PM me if you want to talk more about our situations. Honestly, I feel encouraged to know we are experiencing such similar realities. Just know you can lean on us!

Jo, you got it! I just got home from an ass kicking class where I had to turn a 10 page paper, so my brain is powering down for the night. But I will try to collect my thoughts and post something tomorrow!

[clay]

oHhhhh Dapper...I almost fell off my chair laughing at the animated crapper...thanks, my friend...Clay

Originally Posted by DapperButch

You ARE going to be okay, WE care about you, and WE are on your side! Oh, and we will send Debby over to hold your hand!

Number one order of business....report back to us on the 11th. Not the 12th, the 11th!

I hope you have someone who can go with you on the 11th. Two sets of ears are better than one. Write your questions down before you go, even if you don't think that you could possibly forget any of your questions. Take notes.

And also....sorry about the prep you are going through tonight!
(hoping to make you smile)

[Novelafemme]

I still need to fill my Rx for the colon blow.

SOOOO not looking forward to yet ANOTHER bowl-prep. And from what I hear, this one is the MOST fun!! weeeeeeeeeeeeeeeeeeeeeeeee

[clay]

[COLOR="Blue"]First, let me say I knew I would have an army of comrades in here..and I knew I would be enveloped, held, loved, and cherished..I am not alone in here....for that I am thankful!! I am blessed..beyond measure...I think this is one of the most supportive, the most caring, and the tightest knit group of all..for the battle scars are worn with pride...and we carry one another...we hol done another..for we are mirrors of one another!!! Now, before I begin to cry again...let me finish.
I lost my wife almost 3 years ago..to Stage IV Breast Cancer..with mets to Liver/Lung/Bone/Brain/Skull/Kidney...that was her initial diagnosis[..we were told to make final arrangements and if there was a trip she wanted to go on, to go now.....she had to get 40 rad tx. right off the bat before she could even hope to get chemo....10 to hip, 10 to shoulder, 10 to cervical spine and 10 to thoracic spine.. She was one of first people on Tykerb after that...anyway she gave a helluva fight for 26 months. Liver failure...BUT she was able to die at home, in my arms, and was what she wanted...she asked only that I NOT say she "lost her battle to cancer" but to say she "passed her torch on..and I did! We had 15 wonderful years together...not nearly enough BUT I was blessed with those. Our relationship was wholly loving, healthy, positive, and one in which I would hope to have again. It was so good..and I miss her..so damn much. I know she would be here with me.and her spirit will be..and many others..and all of you here as well...thanks..
My oncologist will be doing a total hysto (uterus, tubes, ovaries, and lymph nodes, along with my appendix) and do follow up with radiation prophylactically! She is hoping to use the Da Vinci robotic arm and do a vag. hyst...so I am hoping that she will be able to do so. I will be at Hollings Cancer Center..a division of MUSC...
So, thanks each and every one of you Brave Warriors..I hope to be half as brave as each of you are....we need to have each of us a pink bandana embroidered....we had them made for my wife..and each of us wore them at the memorial service, had 45 motorcycles there..and released 30 pink balloons in her memory!
Ok folks, let's kick this Big C's ass.what say ye...I'm in...let's crusade on my family...I love you all...totally!! Debby..I will see you tomorrow. I am the one who is smiling....Clay/COLOR]

[clay]

hey C.R. I will share my exploding crapper with ya...after I clean it up a bit...it is nice!!!

Originally Posted by CatalinaRose

I still need to fill my Rx for the colon blow.

SOOOO not looking forward to yet ANOTHER bowl-prep. And from what I hear, this one is the MOST fun!! weeeeeeeeeeeeeeeeeeeeeeeee

[Novelafemme]

the Davinci (sp?) is amazing!! From what I have read it is the best at minimizing any spillage when it comes to uterine cancer. Your story is beautiful, Clay. I'd wear that bandana with pride!!

[DapperButch]

Originally Posted by claybaby

hey C.R. I will share my exploding crapper with ya...after I clean it up a bit...it is nice!!!

She is a lady you dufus, she is not going to be using any "crapper"!