Originally Posted by DapperButch (Post 448537)

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.

Originally Posted by JustJo (Post 448723)

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.

Originally Posted by JustJo (Post 448723)

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.

Originally Posted by Debby (Post 449749)

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.

Originally Posted by Debby (Post 449749)

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.

Originally Posted by DapperButch (Post 453481)

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?

Originally Posted by Tommi (Post 453711)

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. . :rrose:

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 :byebye:, and ...the decisions on which appliances I needed ..ugh... ;)

Originally Posted by CatalinaRose (Post 457645)

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!

Originally Posted by claybaby (Post 457779)

Originally Posted by Debby (Post 449727)

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

Originally Posted by claybaby (Post 457779)

Originally Posted by DapperButch (Post 457787)

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!
:blowingitup: (hoping to make you smile)

Originally Posted by CatalinaRose (Post 457835)

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 :|

Originally Posted by claybaby (Post 457853)

Originally Posted by DapperButch (Post 457915)

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

Originally Posted by CatalinaRose (Post 457826)

{{{{{{{{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!

Originally Posted by claybaby (Post 457986)

Originally Posted by Tommi (Post 458189)

Post Uterine Cancer~ 7 year annual work up includes the Colonoscopy OF COURSE...

In Outpatient Surgery, on a gurney talking to the next in line in on a gurney beside me, it was her first time and she was really nervous. I have had cancer, so my nervousness with her is well hidden as we are just outside the surgery suites, and I didn't want her bolting on my account... Not the time to say the C word to someone about to have this procedure.... the Anesthesiologist came by to introduce himself.

"Propofol ? " I asked, and the Anesthesiologist and I agreed that is what I wanted and was getting to "sleep" during my colonoscopy. His and My drug of choice, no hangover, no problems and it's over fast. I was next now. They wheeled me in, my Doc said "Hi, and turn on your side please" ....It WAS fast, I came to in what seemed like seconds.

My Gastroenterologist is leaning over me.

""Well, your bowel is boring. Nothing to report, and thanks for following the prep. I'll see you in 5 years, unless you want to come back sooner" HAAAHHHhhhhh

Happy Miralax to you, or whatever you need to do, and to all a good day, and night.

Alrighty then, it's not everywhere you can discuss cleansing of colons, and surgery with light heartedness~~~~ but , we are a special group.

To all those coming in to visit, to support one another, and to post I send chicken broth. Doc had me on nothing but clear liquids for 24 hours before my colonoscopy. I had to drink 64 oz. of liquid with Miralax powder, wait 4 hours then 32 oz with Miralax powder. So, I bought chicken and vegetable broth, 6 cans of each~~ I still have 5 of each... IT WAS Ghastly to just drink broth. and yes we are full of crap, as the scale told me that Miralx morning. :seeingstars:

I have gone from Endometrial Cancer Clinical Trial checkups once a week seven years ago in May, to now seeing the Oncologist once a year.

I wish you all well on this journey and the trip around the Planet, and happy bowel prep too. (f) (f)
:pile:

Originally Posted by Tommi (Post 458189)

Post Uterine Cancer~ 7 year annual work up includes the Colonoscopy OF COURSE...

In Outpatient Surgery, on a gurney talking to the next in line in on a gurney beside me, it was her first time and she was really nervous. I have had cancer, so my nervousness with her is well hidden as we are just outside the surgery suites, and I didn't want her bolting on my account... Not the time to say the C word to someone about to have this procedure.... the Anesthesiologist came by to introduce himself.

"Propofol ? " I asked, and the Anesthesiologist and I agreed that is what I wanted and was getting to "sleep" during my colonoscopy. His and My drug of choice, no hangover, no problems and it's over fast. I was next now. They wheeled me in, my Doc said "Hi, and turn on your side please" ....It WAS fast, I came to in what seemed like seconds.

My Gastroenterologist is leaning over me.

""Well, your bowel is boring. Nothing to report, and thanks for following the prep. I'll see you in 5 years, unless you want to come back sooner" HAAAHHHhhhhh

Happy Miralax to you, or whatever you need to do, and to all a good day, and night.

Alrighty then, it's not everywhere you can discuss cleansing of colons, and surgery with light heartedness~~~~ but , we are a special group.

To all those coming in to visit, to support one another, and to post I send chicken broth. Doc had me on nothing but clear liquids for 24 hours before my colonoscopy. I had to drink 64 oz. of liquid with Miralax powder, wait 4 hours then 32 oz with Miralax powder. So, I bought chicken and vegetable broth, 6 cans of each~~ I still have 5 of each... IT WAS Ghastly to just drink broth. and yes we are full of crap, as the scale told me that Miralx morning. :seeingstars:

I have gone from Endometrial Cancer Clinical Trial checkups once a week seven years ago in May, to now seeing the Oncologist once a year.

I wish you all well on this journey and the trip around the Planet, and happy bowel prep too. (f) (f)
:pile:

Originally Posted by DapperButch (Post 459649)

Clay-
Is it fair to say that the colonoscopy was clear, then?

Originally Posted by claybaby (Post 460202)

Originally Posted by DapperButch (Post 457787)

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!
:blowingitup: (hoping to make you smile)